We asked for your views on creating dementia friendly communities. We asked you to consider the following when responding:
- What could be done to raise awareness and understanding of dementia within communities?
- What barriers do people with dementia and their carers face when wanting to participate and access services in their local community?
- What changes should organisations make in order to become dementia friendly?
- What should communities do to make their area more dementia friendly? Which bodies and organisations should be responsible?
- What should be the main factors to determine whether a city, town, or village is dementia friendly?
- What examples of dementia friendly communities are already going on? What changes or initiatives have made a big difference?
Your comments will help inform the work of the dementia friendly communities champion group.
Comments closed on 31 July 2012 but you can still read what people have said below.
I’m currently in my office taking part in a ‘Don’t wear your suit to work day’ in order to raise money and awareness for dementia. It’s things like this this, if participated on a national scale, can make a huge difference.
The PM’s speech is also important and the news on funding is definitely a step in the right direction. It’s now up to the national media to set this high on the agenda to get the exposure it needs to make a difference in terms of exposure.
Care home operators need to take an active approach to integrating their homes into the local community. There are operators that are doing this with schemes such as the dementia cafe’s the PM mentions.
I agree with you Matt,
Care homes should be open to the local communitywith events and a small weekly drop in cafe or afternoon teas so that more people especially the younger generations can be attracted to join in with conversations with the elderly,
I saw a recent proramme where a young lady set up a local drop in point at her local Care Home to take her small children along as tshe didnt have any elderly family in this country and she wanted them to experience family life with older age group, The experience was a fantastic two flow engaging both the young and the old with vast benefits on both parts….. Donna
There are lots of comments already Possibly too many to read and digest well enough but I really hope that our comments can shape and influence next steps and actions
Re some key points from my point of view. I’m a recent ex senior commissioner with Devon PCT and still believe true integration for dementia friendly communities requires better links and partnerships between ALL agencies involved in improving care, access and addressing anxiety and stigma amongst the population often based on ignorance and fear. Sadly the care arena is too often dominated by funding squabbles, protectionism and barriers to joint working and a cooperative culture.
Helping people know about the normal ageing process and how becoming forgetful and having some confusion as we get older is common but not necessarily a catastrophic life event leading to misery. Even for those badly affected over years who might end up with high care needs including the need for residential care can retain huge amounts independence, excitement, fun and variety of quality of everyday life.
A more open debate must be had including in schools and in other parts of ordinary everyday life
A more ‘can do’ imaginative community spirt to share positive and inclusive plans for older people based on respect and inclusion must form the platform for a better future for those of us destined to live into our nineties and beyond. With many of us experiencing need for support for cognitive impairment and BPSD.
A good start would be not to cut their benefits and declaring them fit to work when they aren’t
Please please please look at Caring Companies as this is a loose term as many just dont care, its about the money and how many Dementia sufferers can be assisted in the smallest amount of time making more money for them. Many are not given quality time, the families not given the respite they require as Care Companies will not allocate the Staff to cover them. The Care Quality Commission have such an appalling reputation that Carers just dont bother to whistleblow as they know the CQC will ring ahead of a visit thereby Companies cover their atrocities before getting found out and go back to what they did as soon as CQC’s back is turned. Dementia patients in particular get a raw deal as the Care Companies use their disability to get away with treating them badly. Start at the grass roots and thats the care of each patient and a fair deal for Carers whom the majority of which last 5 minutes in this Industry because they and the people they Care for are treated so appallingly.
Caring Carer, A comment I made elsewhere recently was about the whole attitude to dementia care and its provision/funding. In the days when many people ended up on long stay psycho-geriatric wards with severe dementia, it was full funded. The switch to community care, preferable in many ways to the hospital environment, has also resulted in dementia effectively being ‘downgraded’ from the illness it is, to one which often results in admission to residential care or psychiatric nursing homes, depending on level. People are then either expected to fully pay for or contribute to the cost.
In terms of food/heating and items that they would be paying for at home, this is probably reasonable but many people end up footing the bill for the whole cost of their care. That doesn’t apply if full nursing is needed, ie help with eating and every aspect of their own personal care, but does to all others who, due to level of dementia, are unable to live outside residential care/remain in their homes, any more.
Dementia is an illness, but it’s a profit making businesses for many residential care homes. The staff might be very good, variable in some cases and there are huge issues with general standards. But effectively people who are ill with dementia are not being given the ‘cradle to the grave’ care supposedly provided because much of this, if residential, is being provided by profit-making businesses which are also not being properly regulated.
In terms of making communities more dementia-friendly, the whole national attitude and provision of care for dementia needs to be addressed. I know that is a view shared by very many people.
I have just retired after a extensive nursing career of 43 yr s during which time I had a lot of experience with dementia and all that it entails. It is my contention that a lot of the problems with a person who has dementia is due to lack of understanding how they are perceiving the world and the lack of tolerance from the general population who seem to be lacking tolerance and basic good will.
Society in general seems to need some sort of reformation to get in touch with some basic human qualities that would benefit everyone.
As regards the day to day care of someone with dementia there is a need for a rethink about the way we support them and their carers.
Because it makes sense for the person with dementia to stay in familiar surroundings and it is usually the carer that needs a complete break it would seem more sensible to put resources into putting carers into the persons home so the carer can get away and the dementia patient does not get a set back in having to stay in a place unfamiliar.
We need to be talking more about how we can absorb suffers into our everyday life’s and educating people to not be afraid and involve people who are finding things confusing.
Dementia does not have to be such a big deal if we approached it in a more generous and emotionally mature way. More and more of us will be facing this situation in the future and basically we need to grow up as a society and be more generous in how we regard each other and value our older citizens that have done so much and deserve our respect.
I run a group for people with dementia, mild cognitive impairment and memory poblems and their carers. I would say you have some very valid points Julia. Remember the person!! We aim within our group to nurture the skills our members with dementia have rather than mourne the things they have difficulty with.
hi Jane,thanks for liking my post, If evyrnoee is an artist.I liked the sentiments expressed in regard to art therapy. It is a worthwhile profession.I’ve always been involved with art and healing, having worked for 15 years on art events/projects in hospitals in the Netherlands. I just want to mention here that you don’t have to be an art therapist to work with art as a healing tool. Art health practitioners are on the rise, artists who use their creative skills to help people heal themselves. It is not diagnostic or symptom oriented, that’s why I like it. The University of Florida has an accredited program in this field. cheers, Sarah
I agree with comments made by Julia Hodierne. There should be someway, those experienced in dealing and understanding the care of people with dementia, even if retired, should be able to train others in helping with personal hygiene and care for those affected.
You have said most what I wanted to say!
I volunteered at the Healthy Ageing Cafe in Stockwell, Lambeth, which was run by the Alzheimer’s Society and recently closed (in March 2012) as the outside funding had run out and the Society was not able to continue funding. We decided as a group, co-ordinator (who had lost her position), volunteers and service users alike that we could not let such a valuable service close and have managed to keep it open, as from 4th April 2012 as the Healthy Living Club at Lingham Court. We are doing our best to promote the club and raise money to keep it open. These Clubs could possibly be at the core of creating dementia friendly communities and we need all the help and support we can get.
We are currently involved with an organisation who help young people. A group of teenagers will be doing challenges, raising money for our Club and, at some point in the near future, visiting the Club for an open day where they can chat and do activities with our club members. We also have plans to invite groups of children from local schools who would like to come and entertain our members, be it by singing, acting or reading poetry. We have already had one primary school class visit us and they enjoyed themselves as much as our members did.
I feel education is very important in creating dementia friendly communities and where better to start than giving knowledge to the young people? After all, it is a fact that most people will come across dementia, either in their own family or community, at some point in their lives and what better way of creating an understanding and tolerance than by giving them at least the basic knowledge. In turn, our young people can help educate their parents with their new found knowledge. I know I learn a lot of new things from my 10 year old when he is involved in projects, etc.
It is a constant fight to keep mum at home with my dad with me caring before and after work. The fight includes keeping good carers who leave as agencies pay the minimum, fighting to obtain a high standard of respite where your understanding of the individual effect of the illness is not listened to.
Trying to get people to understand why letting go should not be the automatic step and the begging for support from family members. The most tragic part of the fight is when you give up in some areas – when the cpn tells mum she has had a good innings, when the psychiatrist px drugs previously attempted.
How could mum’s life be better
If the community supported her illness by providing singing or activities for her and others suffering locally.
If she received a regular six monthly review by a cpn who is dementia trained.
If an ethos existed to support the desire to keep her at home.
Give power to the service user in all aspects of care home delivery, including daycare
If there was a greater understanding of the illness, treatment, care and it’s prevelance by the general population and carers I think mum’s life would be so much easier for her.
Purchase an iphone4s or any iphone with OS5 for everyone who has dementia so that they can be tracked wherever they are using ‘Find my friends’ application online. It’s free and won’t cost anything to implement.
I completely understand where you are coming from on this but there are a number of issues in regard to using tracking devices. One being the consent of the person with dementia to be tracked and another being the potential for them to be mugged for the device. If the person does not have the capacity to consent there can still be issues around the power of attorney being able to agree to the tracking advice and following that the person actually carrying them with them.Technology is allowing us to make positive changes to dementia care though.
A tracking system is not an ideal solution but there is a new idea in the pipeline for a new telecare type of system where the person wears a band on their wrist (like the charity bands you can buy) which has an alarm button that will inform a call centre where that person is and that they require assistance. The call centre will then contact the next of kin or designated contact person to attend the problem or failing that would alert the Police/ambulance services.
It is called BUDDI, check it out here..
http://www.livingwellwithdementia.com/buddi/
Personally I feel that fitting Dementia patients with a tracking device is degrading and removes a persons individuality however there are a range of interventions available to help with certain situations such as the telecare system, alarms available which will sound if the patient is out of bed for a prolonged period of time during the night and systems with sensor lights incase the patient wakens during the night.
As the ageing population is continually increasing, people are living longer and are continuing to work past the recommended retirement age. I feel that raising awareness and removing the age related stigma of dementia are key to enabling communities become more understanding and dementia-friendly. As they say – knowledge is power!! and the implementation of a dementia strategy is imperative in the creation of a dementia-friendly society – and this cant be achieved without government funding! As dementia is becoming more common among younger people there should also be special provisions made for young carers and families of people with dementia!
I work as an administrator in a Dementia Unit in Darwen, Lancashire. We are a very small unit of nine bungalows and apartments. Our customers are wonderful people with some difficulties with confusion and memory However, some of them don’t get out a great deal if their families don’t live near. I would like to see some additional funding available for staffing units like the ones I work in to allow more carers so that they can be taken out even if it is only for a walk in the park.
There is still an attitude of ‘state knows best’.
My mother suffers from dementia/Alzheimer’s and has been tols she needs 24 hour care. My father wants to adapt their home – but is being told it is ‘not suitable’ and that my mother needs to go into a home.
They have been married over 60 years and the state is destroying our family.
This is in the north east of England where attitudes of ‘state knows best’ are much greater than in the south-east where I live.
I wish I had the money to move them down here, but the difference in cost of housing is such that I cannot afford it. It is a terrible situation.
Don’t give up!!
There are many ways that a person can be helped to stay living at home, I work in the care industry and recently helped a gentleman stay at home even though he was living alone and had major issues (mostly psychological) with his dementia. Many carers refused to visit him due to his aggression but when treated with respect and using the right techniques I found he was very responsive and quite cheerful.
The authorities HAVE to be more flexable with this new push for raising awareness coming direct from the PM and if keeping your Mum at home is in her best interests and you are sure your Father knows what he is taking on, then keep pushing. If that fails go to the local MP!!
I wish you all the best of luck in your pursuit!
)
I suggest, try to find out about “extra-care housing”. This combines housing, support and care in a way which doesn’t force couples to live apart. There is 24-hr care available on site, but the people there have a normal tenancy (and sometimes options for purchase or shared ownership).
There are some schemes which are entirely independent and private, and some where the local authority is involved in funding care and monitoring the services.
Short article here: http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1101&pageNumber=3
As the former Group Executive Chef to Caterplus I have spent the las 3 years developing recipes for dementia and I make them as simply as possible to retain as much nutrition as possible along with great presentation and colour to help create stimulus. I have shared a couple of these on my blog ( hmtconsulting.wordpress.com ) if you like them I would like to share a load more.
Hugh McGivern,. Catering is darned important actually. The first home my mother went into tried their best, and ‘even’ the cook contributed ideas to helping to calm residents down. In my mother’s case, realising she liked her early morning cup of tea in bed, she suggested this to set her off on the right foot for the day. Plus other suggestions re food during the day.
It’s very important also that people get good food, and that they enjoy it. As important as any other aspect of care. those little food highlights during the day can make all the difference.
David Sheard @ Bradford University, the most forward thinking technique’s, “Feelings Matter Most”, “Dementia Mapping”, to name a couple from the top of my head.
We need to be looking at the needs of those challenged by Dementia, living within a variety of situations and providing Training for all those Carers, paid or unpaid.
With an Ageing Population, this is a task which needs to be taken seriously by all Political Parties, as a priority !
These technique’s are known to enhance the lives of people living with Dementia, moving from “I’ll being” to “well being” ! (Google the Website).
My knowledge of this organisation is only from Training I attended, which I found invaluable, in my role as a Workforce Development Officer, within Local Government . (I took early retirement, last year).
Visit Debenham in Suffolk! http://www.the-debenham-project.org.uk/
Dementia friendly communities can only be created by educating everyone in what the term Dementia means. Many people are not aware that Dementia is an umbrella term that covers Alzheimers disease, lewy body dementia, frontal lobe dementia and Korsakoffs to name a few. All of these affect the brain in different ways and therefore result in different symptoms. More importantly than this people need to be made aware that a diagnosis of any of the above does not automatically mean certain behaviors are going to be displayed and the disease is going is progress in a certain way. The fact of the matter is we are all individuals and no two people with dementia will have the same experience.
The person has to remain at the centre of everything NOT the dementia.
I feel very privaledged to be part of an initiative run by Alzheimers Scotland and The University of The West of Scotland whereby by the end of this year 300 NHS and social care staff will have been trained to act as dementia champions. The dementia champions will take forward a positive and person centered approach to dementia care in their workplace and also further afield.
I feel it is also important that it is not just NHS and social care staff that are educated on dementia but also shop assistants, receptionists, bus drivers etc as in reality they will come into contact with people who have dementia on a daily basis and the way they respond to people could either make or break a situation for someone with dementia. Cards are available for people who have dementia to carry and present to someone if they are struggling with something but unless the person reading the card has an awareness of dementia they are of no real use.
With this in mind perhaps the education about dementia should commence in secondary school as these are the people who will be undertaking the above roles. Having heard a number of speakers give talks on dementia I have found the most influential and inspiring ones were those given by people who themselves have dementia. In Scotland the Scottish Dementia Working Group is paramount in providing this education and insight.
There is still a long way to go but speaking from a Scottish perspective (only because I am not familiar with what initiatives are taking place in England) I feel we are making good progress and the above group along with Alzheimers Scotland and The Scottish Government are very much ensuring dementia is something more and more people are gaining an understanding of.
their child has a learning dsiibilaty and therefore is unable to sign paperwork there are too many officials demanding that people with learning disabilities do things that they are unable to do (who have no understanding, or who appear to understand everything, or who agree to everything said to them even though they don’t really understand what was said to them) officials don’t understand this. Too many benefits agencies, banks, and others with paperwork to complete insist the paperwork be signed by a disabled person, and they also refuse to accept the word of the carer or the signature of the carer on behalf of the disabled person. It is a huge battle for parents, a battle that parents have to fight over and over and over again with each agency or official they meet. Will no-one ever learn? It is time these people got some training, perhaps from the parent carer forums that are led by carers in each Borough (see National Network for Parent Carer Forums, nnpcf.org.uk).So I would like to re-iterate the words of the article please contact your MP this weekend to ask them to attend the debate next week, and to speak out for fairer treatment for families and friends who care.
Suresh an IT Tutor in Dudley: I provide care for my dad who had a stroke in 1996. Physically disabled and mentally the early signs of dementia though his behaviour and responses to daily situations have varied since his stroke.
I currently recieve Direct Payments to support and look after some of his needs like bathing and washing as well as keeping him mobile. I would like local councils to offering professional short courses where carers can improve their knowledge and skills in caring. These carers may one day provide carer to neighbours and friends. These are the people who really care and can dedicate themselves to supporting their communities.
I would like training in dementia, lifting techniques, health and safety, first aid, meeting hygiene needs to reduce the chances of infections.
Another idea is to introduce a project into schools for teenagers to support local charities in befriending community members so the divide between the young and elderly can be understood from an early stage. Not everyone has grandparents but knowing and understanding that we are still the same when we are old is important so this divide is reduced even further.
Dementia is difficult and something that will be around for sometime but loneliness is something we can cure today.
There are so many aspects it’s really difficult; dementia affects individuals differently although there are common symptoms. I notice someone made the point about dementia sufferers carrying cards to present to people to let them know. That depends on level of dementia but one of the aspects is of course memory, and many dementia sufferers won’t remember they are carrying a card to present to people, or why they are supposed to be presenting. Even if they do, that doesn’t enable the shop assistant or bus driver necessarily to know how to respond as the person who wrote that has said. It does depend on the level of severity but some people with quite severe dementia do live in the community, not in care homes, and constantly changing perceptions, sometimes from minute to minute, affect behaviour and conversation so dramatically.
There are different problems for people remaining in independent accommodation and those who move into care home settings of course. I would agree, from my experience, there is a massive problem with the CQC and I know many others have found the same. Apparently it’s been raised numerous times and not enough has been but the organisation needs a thorough overhaul, and that is key also to improving standards in residential care. That is all part of making the community more dementia-friendly.
My experience has been that organisations that should be greatly concerned about issues of concern have been worse than dire, including the CQC, and that again, I have found, is an experience others have had.
One thing that desperately needs to be addressed is care/nursing home staffing levels/standards; that is something I have found out has been raised by people in homes, who have been ignored, it’s a point that is constantly ignored. And it’s a ‘basic’ one. Addressing making communities more dementia friendly only works if the whole aspect of dementia care is confronted.
So many things in daily life now depend on passwords, key codes, and automated telephone services (banking, utilities, contacting companies etc.). These automated services are designed for the convenience of the company and the younger user, who is not intimidated or confused by numbers and technology.
Older people may already find this difficult; factor in dementia and it gradually becomes impossible for the user to access any of these services. This will be an increasing problem as we all get older and need hundreds of passwords for everything.
Young people who design these systems probably cannot conceive of being unable to type in a number, even if it’s written down in front of you (as can often be the case with dementia); add to that pressure of time to key in quickly in sequence and the lack of a responsive human voice at the other end of the line, and the whole experience becomes highly alienating – and they may itself become a source of confusion and upset.
It would be good for large companies and organisations to give some training to their tech staff to they take memory problems or cognitive impairment into consideration and devise some form of simple, secure, personal id access for people with dementia (and other cognitive impairments).
@Caroline Doyle-McManus: the iPhone app may be a very good device, but I would be wary of relying on this with a person with dementia. In my experience, gadgets of any kind can be a liability, and if the person doesn’t understand how to use it (even if the intention is just for them to have it on their person and don’t do anything with it at all, just use as a transmitter for the carer to keep track), the potential for misuse, mislaying, panic, theft/mugging may outweigh the benefits.
That seems a very good point about increasing technology causing problems Ming, it’s often alien to older people but very confusing for those who are younger with early onset dementia or other mental health problems. I’ve known older people who haven’t had dementia be completely dazed by phone advice telling them that they need to go online to fill in a form to something, or go online to check something. It’s unrealistic to expect everyone to be able to cope with that. I truly can’t see many people with dementia being able to cope with an i-phone. It’s an innovative thought to provide them to people with dementia but the practicalities of use probably, and as you said, vulnerability due to carrying one, might outweigh that.
Trying to keep someone from wandering when they’re dementing is near impossible. In my experience, and I know others, the psychiatric services have no solutions or suggestions for this because really there aren’t any. Locking someone in is not an option either at home. And it can be quite a strain for other people having someone in that state knocking on their doors. If someone has no insight into their mental state it makes it much more difficult.
I was thinking about the whole topic of making communities more dementia friendly. A lot of people cope very well when confronted unexpectedly by someone who has problems due to dementia but there aren’t any easy solutions. One of the associated problems is restless, for people with good mobility these means they might constantly walk around and go out. Also, they can go and knock on doors in a state of confusion. My relative for example, kept trying to go to a nearby house where she was convinced her mother lived. The house was nothing to do with her family and completely unrelated people lived there. And there were other reasons she also went to peoples’ houses, which was difficult for them.
I know many people have similar experiences of sufferers of dementia wandering like that. It’s an extremely difficult illness to try to ‘contain’ in any kind of community or residential area.
I am glad that the PM is calling upon young people to meet the dementia challenge.
I work with young people, as well as with people with dementia, and I find the stigma attached to teenagers as unhelpful as the stigma attached to ageing, and dementia. Young people have much to give, and do give, enthusiastically, when given the opportunity. Conversely, people with dementia have much to teach to youngsters, and not just about their disease: their long term memories –as long as they remain intact– are an open window on our human heritage, which many youngsters often lack opportunities to peek through.
Some charities have been leading the way, doing intergenerational work, for quite some time.
Prior to David Cameron’s call, we –at the Healthy Living Club at Lingham Court (a Club for people with dementia and their carers)– were approached by a charity inspiring teenagers to strengthen their communities.
A group of 12 Brixton teenagers will come and meet us on 27/06, to learn about what we do –and why it is important. Then, they’ll then be fundrasing on our behalf and, finally they’ll be contributing the Challenge’s own resources –not the money they fundraised– to treat us to a barbecue on 15/09.
As well as socialising around food, the people at the Club, teenagers, and time-bank volunteers will also be working together and produce a piece of art that will outlive the day: we’ll be painting a giant board, to celebrate people of all ages.
We are looking forward to the team-work, and to the team spirit which –we hope– will lead to us engaging in initiatives involving young people on a more regular basis.
The charity which organised this wonderful initiative is called “the challenge” (thhttp://www.the-challenge.org/young-people/what-is-the-challenge/).
“The challenge”, therefore, has been meeting the “dementia challenge” from before it was launched, and the other piece of good new is that the initiative is taking place within an extra-care sheltered home run by a large company which has been enabling the Club to meet at their premises WITHOUT ever making an attempt to impose their own agenda. Good stories do happen and, together we will keep them happening!
Stop doorstep sellers and cold callers from contacting people with dementia.
@ Isobel—-Instead of seeing the person as “wandering”, see them as “walking with a purpose”.
The fundamental issue here is to see “the Person” or “Person Centred Thinking”.
If you start by placing “the Person” at the Centre of everything you “Do, with them”, rather than “For Them”.
Think about the Person, their Lives, Who they were, Relationships, Values.
This must include both good and bad experiences, which they have experienced during their lives, prior to their disability.
If you are able to “Crack” this, you will only then be able to offer appropriate Care, from an individual perspective, which will enhance the Persons life.
Kathy, to be truthful, having a rose coloured view of dementia doesn’t help; it’s a devastating illness and harrowing coping with someone in that state. And prattling to someone who has coped with a close relative’s tragic decline about ‘person centred care’ is something many people who have been in the situation I have, would find offensive.
They’re ‘walking with purpose’ from their point of view, because of their delusional perceptions. In my case, a relative who was convinced her mother lived in a house nearby which was inhabited by completely unrelated people. She kept going to the door. One evening I was particularly alarmed because she was wearing indoor shoes and was insisting on going out in the dark, on icy ground, to visit her mother. Trying to stop her, she swung her aluminium walking stick at my stomach. That is the other issue that can often happen with dementia, a person who has never been physically violent can develop that behaviour.
Her psychiatric keyworker nurse in the nursing home where she finally died had experience from both perspectives, that of a relative – his father had had dementia – and as a very experienced psychiatric nurse working with dementing people. The reality is that it can be a total nightmare coping with someone at home with severe dementia.
You don’t sound as if you’ve had any real experience, it’s all jargonese out of ‘person centred care’ training. Thinking about the person, who they are, and what their life experiences have been doesn’t in fact help with the fact that in many instances,they’ve forgotten their life experiences. It’s a feature of dementia that people often return to a time in their lives long ago, my relative for example, thought she was back in her late teens/early 20s most of them but was in reality considerably older. The people and experience she had after that had about 99% of the time ‘gone’, very occasionally you get a brief glimmer of lucidity when memories return, which passes within minutes often. It’s never clear what the trigger is and trying to stimulate it simply by talking about their past lives doesn’t work, in fact it can cause confusion and anger. Their used to be more emphasis I was told on trying to ‘orientate’ people to reality but that is not practised so much now because it causes distress. It’s important wherever possible to go along with the dementing person’s reality, where it isn’t actually potentially dangeroous to them or others, because that keeps them happier. So if they want to chat as if you are someone they knew when they were a teenager, long before you were born, that is what you do. You don’t keep saying ‘no, I’m your daughter’, because the person has gone back to a point long ago in their lives,before they had a daughter.
Incidentally when my relative was admitted to an acute psychiatric ward because her symptoms were so severe it was no longer a possibility to keep her at home, her psychiatric key nurse told me that they were struggling to manage because of my relative’s behaviour and determination of spirit, and didn’t know how I’d managed alone at home with her for so long at all.
With dementia you are coping with a very distressing reality, not a load of psycho babble theories. And that, when addressing making communities more dementia friendly, is important also to remember. There aren’t any easy answers. It’s a torturous mental state for people to be in, and if it reaches a certain stage, there isn’t much peace of mind for the individual. Or for anyone trying to care for them.
Isobel
I totally agree that having a rose tinted view of dementia does not help.
However having a view that it is possible for people with dementia to live well, and to experience quality of life no matter how advanced their dementia certainly does.
Every person with dementia is different, and we need to be wary of expecting others expereince to match our own.
So, Rose tinted or otherwise, we need to be careful to avoid anything which distorts or colours our view of the person in front of us, which I think was the point that Kathy was making.
Steve, what Kathy was doing was giving a generalised view suggesting that by adopting a ‘person centre approach’ etc it somehow miraculous removes the problems, if you read what she said closely. It appears she has acquired the theory without practical knowledge.
Most people who have cared for a dementing person with them are very well acquainted with what could be called a ‘person centred approach’ and trying to give the person as good a life as possible. However when looking at how communities can be more dementia-friendly, taking into account the reality of the illness helps.
Although it does of course vary in different, there are particular aspects that will be common to many. The way it affects them will depend to some extent on their underlying personality.
Most people who have experienced caring for someone with dementia have experienced the many problems, often very traumatic ones, that go along with that. It is a very tragic state.
The amount of mental torment in someone with severe dementia doesn’t by that stage leave them a good quality of life; delusions can be frightening, confusing and sometimes threatening in their minds, depending on what form they take and there is very little anyone can do to counter that regardless of day to day experiences. Not everyone develops dementia to that stage but many do.
It also depends on stage of dementia, Steve Milton referring to people being diagnosed earlier and using cards etc; for people with insight into their state, at less advanced stage (and hopefully with increasing medication breakthroughs and early diagnosis, more will be prevented from developing further symptoms) I can see they would be helpful.
The High Street scheme sounds a great idea as well.
Thanks for your reply Isobel.
I totally agree that ignoring the massive impact that dementia can have on people does no-one any favours.
However I would challenge your view very strongly that people with advanced dementia cannot experience quality of life. Forgive me if I misinterpret your comments, but that is my inference.
How we value people, how we treat them, and where we look for the spark of humanity in people who are nearing the end of life with dementia will play a significant role in determining their experience.
….as of course will their personality, history, relationships, other health problems and so on.
With the right support, people CAN experience well-being, a sense of purpose, belonging, that they matter and are loved.
This has to be our default position. People with dementia and their carers deserve nothing less.
Isobel. My intention was not to insult or disregard your own experience of caring for a relative challenged by Dementia.
My intention was to firstly suggest the David Sheard site as a valuable resource and latterly attempt to briefly expand on techniques, which I have found most useful, within my role as a Trainer in Social Care Services.
The feedback, from an organisational perspective, from those who provide residential care for Older People,which includes those suffering from Dementia & Alzheimer’s, has been both positive and encouraging.
The same can be said from feedback received fron relatives and friends of service users.
I am not basing my opinions upon ‘one training course’, which I attended and regret your impression, founded on the the way in which I wrote the Post.
I have actually worked within Social Care Services @ Local Government over a 35 year period.
My suggestions may not be of use to you Isobel, but I sincerely hope they wil be of use and interest to other readers, which was my intention.
Kathy, you addressed your comments direct to me as if giving direct advice so saying they were for other people is somewhat disingenuous.
Certainly from what you wrote, I would not have guessed you had any such level of experience from what you wrote, as most people who have extensive experience of dementia would be familiar with the issues I mentioned.
The majority of experienced social workers and psychiatric staff who have are fully aware of the problems of the wandering that dementia causes, due to restlessness caused by mental state. You did not appear to have that awareness from what you wrote.
I was aware of David Sheard’s work and in particular, how it can be applied to residential care settings.
However the issues of addressing dementia in the community regarding being dementia friendly also relate to the impact on others, ie constant interruptions which can occur from people with dementia in their local neighbourhoods. Many individuals cope with that with patience but it can be a massive problem, which I know is someone experienced by other carers.
It’s never a good idea incidentally to hand out advice based on not knowing a person, their circumstances or their level of knowledge and if you have the experience you say you have, you should be aware of that.
Just had a look at other comments above because those about teenagers becoming involved are inspiring and it’s amazing how well very young people can often get on with those with dementia. And also, their presence can enhance lives.Simon Florio’s details of a project and Suresh Kumar’s ideas impressed me.
Music makes a huge difference often to dementia sufferers, it’s incredible how cheered and calmed many can be listening to music they like, either played ‘live’ or through recordings.
It was the comments about teenagers I was particularly reading and while looking back at those, found the response to me from Kathy Simmonds. Looking above I saw her statement that she went on a course held by David Sheard of Bradford University, who has done internationally renowned work of course with ‘dementia mapping’ and has extensive experience of dementia.
However reading what Kathy has written on that comment, that she attended a course as a Workforce Development Officer with Local Government. That would explain why her response to me contained what sounded like a load of jargon from a training course by someone who had no first hand knowledge of coping with dementia. Because presumably, that is exactly what she was doing. David Sheard of course, has extensive knowledge of dementia. But people attending 1 course and then thinking they are qualified to advise others who have experience of dementia, on the basis of not understanding the problems it creates but being able to quote from literature from the course they attended, are not helpful
The problems with dementia need to be fully acknowledged within communities in order to make them more dementia friendly not ‘glossed over’ as if there is some magic solution.
Innovations in Dementia – a community interest company of which I am one of three directors – recently completed work under the Ageing Well Programme (Local Government Association) looking at how we might best support the development of dementia friendly communities.
One of the outcomes of this work are tools for practical use at community level to assist in the development of dementia friendly communities.
Copies of the tools (how I hate that use of the word!) that we produced as part of this work with Hampshire County Council can be found at our website here:
http://www.innovationsindementia.org.uk/projects_communities.htm#communities
The Local Government Association has also produced guidelines and learning points from our work – which will be launched shortly.
Regarding the comments and those of others about the cards carried by people with dementia.
Totally agree that they are not a panacea, nothing is.
Also agree that they are not suitable for many people with dementia – but having said that, as people are getting their diagnosis earlier and earlier, more and more people will be able to use basic technologies like cards, and more complex technologies like iphones to help them to remain independent.
Incidentally, the first ever iphone I saw was being weilded to great effect by someone with dementia – Peter – you know who you are if you are reading this.
It’s important to try and make sure that the technology fits the needs of the person using it, rather than the other way round, so one limitation of the cards currently in use by people with dementia is that they don’t allow the person to decide how they want to be helped.
……another is that shop staff seeing the card don’t neccessarily know how to respond.
Included in the toolkit above is a proposal for a memory Aware Hight street – that includes provision for cards to be filled out by people with dementia themselves, noting how their dementia affects them and how they can best be helped.
There is also a helpsheet for customer-facing staff, to be used either on its own or as part of a high-street scheme whcih gives them a little of the information they need to know about how best to respond to someone who might be having difficulties associated with dementia.
Please feel free to download and use the tools, or contact me through our website if you have any questions.
I feel the main factor to be able to support people in the community with dementia, is time. There is so much pressure on families to work and provide for themselves that many people do not have the time or resources to look after their loved ones. For those who give up work to look after someone, they often end up with financial pressures and emotional pressures due to lack of income and affordable or appropriate respite. There needs to be more flexibility in working arrangements and more financial and emotional support so dementia sufferers do not end up being looked after by often untrained support workers and can be looked after in the community by people who love them, supported by trained staff who have the skills to properly care for people with dementia and their relatives.
I believe there should be in international symbol, just like the wheelchair symbol, where some staff in banks, restaurants, retail outlets, taxi companies, hospitals (yes even them as mostly the care of someone with dementia in a hospital is very poor) and other community places have some basic training about dementia and how to communicate with people with dementia.
Furthermore, people with dementia, especially in the early stages of diagnosis, should be referred to a brain injury or rehabilitation unit for authentic brain injury rehabilitation, to be proactively treated to live the very best life possible with the injury or disease they have. For example, just like someone with a severe brain injury from a road accident.
I am a younger person living with dementia in Australia (53), with the emphasis on LIVING. See my website for other ideas. http://kateswaffer.com
It is a resource now part of a Masters Dementia Programme in Scotland, has influenced a course on Neurophysiotherapy Rehabilitation at Flinders University, has been archived by the Australian National Library in their PANDORA Collection, and is being used widely by people in the dementia care industry.
As the Scottish Dementia Working Group also say, there should be ‘nothing about me, without me’. People living with dementia are the ones who should be driving policy and change.
our project in St. Austell, Cornwall, aims to re-connect older people with their communities. We have worked over the past 3 years with a care home, involving young people from a local school and a youth group in creative outdoor activities with residents with dementia. The emphasis being on the word ‘with’. The young people have engaged with the residents through activities, trips out and the redevelopment of the care home’s garden. Friendships have formed and the young people have a much greater understanding of the residents as people. One resident said he enjoyed spending time with the youngsters because they understood him better than adults did. Community engagement is more than people turning up for a summer fete or school children singing Christmas carols in the corner of the lounge. Not that that’s not good, but it doesn’t engage residents with communities to the point that people are spending any meaningful time together. You have to provide activities and space for people to come together, to share stories, memories and to learn from each other. Many care homes have outdoor environments that can provide a place for this to happen. There are some great projects going on around the UK where this is going on but not enough. It doesn’t always have to be about gardening either; reading together outside under a shaded tree, or playing music or games together can be stimulating intergenerational activities. Many schools are keen to get their pupils involved in community projects but they may not automatically think of working with a care home. Hopefully our project, Creative Spaces, and others like it will help to raise awareness and inspire others to look at care homes as part of the community again.
On a short note, we’ve received extended funding to take our techniques and activities out into communities in Cornwall to support home carers, people with dementia living at home and those who support them. Thank you for the opportunity to share what we’re doing with others through this website.
Wendy
Having read your comment about your project in Cornwall I would be very interested in finding out more. Do you have contact details for the organisation or Project Management group in Cornwall, please?
We really must ensure a better understanding of this condition, at ‘grass roots’ level.
Clearly there is a great deal of fantastic work being undertaken.
Here in the East Midlands we have, within each of our neighbourhood centres, set up ‘Coffee Bars’, where individuals, together with their Carers, can take a trip out to.
These Centres are User friendly and safe.
I feel it is vital, from a quality of life point, for there to be emphasis on providing such services, within local communities.
Imagine, a person who has held complete autonomy, within their own lives, being contained within four walls, for the majority of their lives, post diagnosis !
(This under the ‘it’s for their safety’, excuse,not to mention deprivation of liberties).
We must ensure sufficient support, to enable such activities to continue, in order to enhance the lives of sufferers, that takes money and extra support staff.
Sufferers and their Carers need to know how to access such services, to feel they are not isolated and alone and I agree, should be involved in planning a strategic direction.
I agree with you Patty; we’ve carried out some community workshops for home carers, demonstrating a selection of activities and they all say the same thing: “please can we have more of these ideas” and “I don’t know where to go for support!” Many of them didn’t realise that Cornwall has around 24 Memory cafes where they can go for support, advice and enjoy participation in a variety of activities. There needs to be more support out in the community, but more importantly more effective methods of getting that information out to home carers; not just through surgeries, but libraries, shops and other local services. Perhaps even setting up dementia information points in places like libraries, council offices and community centres, where all information about local dementia services (medical and social) is held together in one place. I don’t know if that is happening somewhere already?
Hi Wendy, sounds like fab work you are involved in !
On the subject of ensuring more effective communication of services available ;
Am I right in thinking, all households receive annual information on their Community Tax charges or Income Tax information?
Would it be possible for Councils to include a ‘leaflet’ with such correspondence about local services available?
I’ve had this same conversation re the recent ‘change over’ of TV’s.
Apparently, there was an issue here, where many older folk were left without any TV service ! (Source I think was Age UK).
Not sure what the situation is like now?
Posted on She’s an exceptional fitgehr, and a very strong person. I’m very proud of her, and glad of being by her side loving and supporting her. <3
@Isobel.Re your most recent Post……
“the majority of experienced social workers and psychiatric staff, who have are fully aware of the problems caused by wandering”
Without wishing to be rude, I am horrified at the thought that any professional, would be using such outdated, ignorant terms !
If you really do have an interest in the subject matter, may I respectfully request you READ the literature, before you comment.
As Steve Milton has said, it is possible for the Individual to experience well being, even within the latter stages of Dementia.
Government Guidance on allowances for ksinhip carers needs to be challenged. Many of us had to give up work because we were made to prove our commitment to these children. Which I did in a heart beat, as the word adoption’ is held over many of our heads at what is already a very stressful time! Promises from LA’s are not full filled and they do not inform people correctly of what can and does happen after an order is made (i.e SGO).Main stream foster carers may not be able to claim child benefit but they can and do claim tax credits, this is not deducted from any allowance they receive, they also receive extra’ for holidays, Christmas and Birthdays. It is well documented that children placed with family and friends fare better and retain their familial links, however to plunge them into poverty more or less overnight is wrong on so many levels. We are saving this Government millions of pounds. Why should our children go without just because we saved them from a life of being in care’?
Wendy Brewin’s Cornish project details sound great.
I was trying to find this link the other day, of an elderly man in a home reacting to music. http://t.co/Iq4jBP7M Very touching to watch.
It is amazing the effect love of music has on people, sometimes reaching them when everything else appears to fail.
Hi Isobel, Yes I’ve seen this video too. Anything that stimulates the creative part of the brain seems to me to be something that is hugely beneficial in dementia care. We’re currently working with a poet and digital artists to give people with dementia a ‘voice’ in their communities and to raise public understanding that there is a person behind dementia, someone who has a wealth of knowledge and experience, who hasn’t lived but is still living, still has dreams and aspirations. If we can engage people in communities in these activities with people with dementia hopefully it will help to increase their knowledge and support and be a step towards more dementia-friendly communities.
.And Gabby is absolutely right – we need to have a prpoer consultation with all young people else we end up simply meeting the needs of a particular age group rather than the needs of all young people.I’ll be trying to do this through the College but would welcome ideas for how else to get views.
Yes, music can have a great effect on the Individual.
This is because, as with us all, music can take us to a place or experience, deep within our “memories”, both good or bad.
This is a good example of how we can get close to the individual, providing an activity which will have the effect of improving their well being.
I have seen this method used and the thing which struck me most, was how one individual was able to recite every single word, verbatim ! Not just with one song, but with each !
This individuals whole demeanour altered, from one sitting, closed, alone,sad to one smiling, looking around, making contact, tapping foot to the beat.
This is a great example of how, despite outward appearances the person challenged with Dementia, is still a real person, with personality and life experiences, which we must respect and nurture, rather than viewing as a poor pathetic creature, with nothing left !
I’m mindfull, my previous comments may have been offensive to certain posters and I am very sorry for thiis, I am absolutely in no doubt, those opinions are both valid and heartfelt.
I have no wish to take away from their personal trauma, as a result of their experiences and I wish to let it be known, their opinions are most appropriate, crucial to further planning within community projects and those willing to share their experiences are to be respected as both brave, honest and inspiring.
I hope, truly, you will continue to contribute to this directive, your experiences should quite rightly be used to progress change !
Well, i have read all the comments, and as someone who was diagnosed with Dementia four years ago i am somewhat surprised that no one has asked the question “Why dont we ask someone with Dementia what they think ???” Its incredible to think that the majorityof people think that Dementia = end of life or close to it. I am LIVING WITH DEMENTIA noy dying from it.
And since the time of my diagnosis i have written three books on the subject, i founded the fist UK dementia awarenewss Day or DAD day as we call it, to be held again on sept 15th this year, i am the chairperson of the Torbay dementia leadership group which consists of six people, all who have a Diagnosis of Dementia and i am also so proud to say i am the founder of the Torbay Dementia Action Alliance which will soon be reporting (within the next couple of years we hope)that Torbay will be the first ever Dementia friendly resort in the counrty!!!
So, please tell me again, why has nobody asked this question before ??? I have a diagnosis, and if i can organise and achieve all this, why cant others ??? If you want to know how, please e mail me on norrms@gmail.com or have a look at my website at
http://dementiaawarealliance.wordpress.com/
Best wishes, Norrms and family
Well said Norrms.
There will be more and more people like yourself who are taking the lead in deciding what needs to happen both locally and nationally.
The problem is that many people still have a view of people with dementia as being largely helpless, and hopeless…..and that is a message sadly which is recieved and taken on board by people with dementia themselves very often, in the absence of more positive messages.
I think it was Paolo Friere who said something along the lines of “if people tell you often enough that you are useless, you begin to believe it”
We were very struck in our work around dementia freindly communities that the kind of support that people get post-diagnosis plays an important part in determining the extent to which you engage with your community, and with the rest of your life.
So, on the the one hand, people who were given a message, even an implicit one that dementia is all about death, decay, destruction, decline and loss……..
…….compared to those who were encouraged to understand that it is possible to live a good life with dementia, despite the difficulties it can bring.
Keep up the good work!
Totally agree Norm! To add to this:
In the later stages when it is not possible for sufferers to arrange things themselves it should be made easier for volunteer visitors much like hospital befrienders to access carehomes to visit those who have no-one else. Just because “dementia sufferers cannot remember anything” does NOT give anyone the right to ignore or take advantage (which seems to be happening a lot.); especially with specialists who see a patient once saying there is nothing that can be done. Solitary confinement is not deserved but many of our aged suffer this indignity. A great deal of difference in behaviour is seen with regular visits; contact and providing useful tasks and entertainment for all.
We – Mum and I – have had a great deal of support from our community already in the form of the local pub displaying an art exhibition for Mum’s sketches which were enjoyed by all and raised awareness; tombola in town on Dementia Awareness Day 17th September; plant sales at car boots etc.
This proves that Dementia sufferers – even in a later stage of the disease – can be involved in the local community and continue to enjoy (even just for that moment) being in a society that really cares. Dementia UK (Cornwall) I note are promoting Admiral Nursing – excellent idea – as we currently have none operating in Colrnwall and this should be rolled out everywhere.
The government has gone ahead with digitalizing TV’s – However in my mothers area this has been done by satelite. Having dementia coping with a Stat box + new controlls is beyound her and she is dependent upon calling carers to leave on. Although a new TV may help, TV’s with Freestat are much more expensive than those with freeview. This is a great shame as the stimulation from TV would be benificial.
In discussion with carers at a support group, the following suggestions/comments were made:
Dementia needs to be taught in schools, so that the younger generation gain knowledge/understanding and are less likely to deem dementia as something ‘funny’ happening to grandma/grandad.
Eevnts that involve the public doig things alongside people with dementia help to break down barriers/perceptions. Eg. Coffee mornings and the Alzheimer’s Society Memory Walk.
The word ‘dementia’ caused issues for some, prefering to refer to memory problems. However, it was accepted that this doesn’t cover all the symptoms of dementia and language is a constantly evolving thing, so always best to ask the person with dementia their preferences on any ‘labelling’.
The government are hiittng us that need it most I look after my gran child and have donr since she was 6 weeks old she is now 7 and I find myself having to look for work both her parents let her down on a regular basis which messes with her emotionally and now I feel that I will be doing the same when I go back to work shouldn;t the childrens needs come first.
Dementia and memory loss is a problem for the aging population, this is often also associated with mental health problems such as depression which can start much earlier.
There is a way in which these symptoms are being successfully addressed by people taking part in creative activities such as painting, drawing and singing etc., However in most situations the professional carers and staff do not have the time for the one to one attention that is needed, so trained volunteers are essential.
This can create a virtuous circle, the volunteers help those who take part in creative activities and by doing so they help their own mental state and feeling of well being.
If more money were spent on creative activities for the whole population and training those who help it happen, the health of the whole nation would improve and the cost of care and treatment would reduce.
Taking part in creative activities provides improved self confidence through achievement, improved wellbeing through companionship with others taking part and it is very inexpensive to provide.
I am at Staffordshire University, and at the moment we are working with the Anglican Diocese of Lichfield to help this part of the Church of England to think about its response to dementia. Whatever you think about their religious claims, faith organisations are generally very well placed to deliver on the National Strategy: they meet a lot of people (early intervention) and know someof them for decades (continuity of support). They can also affect the attitudes of all their members. I’d like to see them given more help to become ‘dementia friendly’ communities.
I have a friend who has early onset dementia and at the moment she manages to live quite independantly but visits to the GP and the dentist can leave her feeling stressed after navigating her way around. I think all health settings could look at their environment from the eyes of someone with dementia and make clear signage for all doors, directional signs where necessary etc. I hope to promote this locally.
We are currently working on a dementia friendly event in Bonar Bridge in Sutherland. The intention is to bring together the community including the local primary schools; local clubs and organisations; local services such as NHS Highland, Alzheimers Scotland and Crossroads and deliver a combination of information about dementia but also an assortment of different activites designed to bring people with dementia and carers together with members of the community to have some fun and participate in activities together.
This is in many ways a pilot and if successful, we would like to explore how we can create this in many more communities across the Highlands of Scotland to make a difference to the inclusion of people with dementia and their families/carers and to ensure we build up many more dementia friendly communities.
I am the Daughter of a Mum in year 13 of Early Onset Alzheimer’s Disease. Mum’s illness has impacted on me in many ways. I currently post a personal digest of ‘Dementia’ and ‘Other’ News on my Facebook page, as part of a 3-Wall Alliance, of myself, Dementia Campaigner ‘Norm Mac’ (talking about his own dementia and awareness raising activities) and the International ‘Dementia Aware’ Group. My objectives are to raise the profile of the Alzheimer’s Society ** in an ‘International context’ , to raise awareness of dementia, including among the young and generally ‘Hold hands around the world, talking about dementia’, so that we are all ‘talking about dementia! This activity is timed to be carried out in the ‘run-up’ to the Olympics, when many eyes around the world may well focus on the UK. I have been working for nearly 18 months on this project. My Facebook themes are ‘Singing and Dancing’ to support ‘Singing for the brain’ initiative and ‘Living Well with dementia’, plus ‘Walking, Cycling and Gardening’ activities useful when thinking of ‘dementia prevention’. Many thanks for listening, all best Heather Pearson https://www.facebook.com/heatherppp?ref=tn_tnmn ** I am a member
Hiya all, just an update on what we are doing here in Torquay. Since my last post we have nearly 80 buisness signed up the The Torbay dementia action alliances (With Hundereds more to come) and all are in progress of making ALL thier staff Dementia aware. YES!! its that simple Folks !! We are quite simply giving out documents and factsheets explaning exactly what Dementia is, the different types of ect and i have also written myself the problems that i personally face on a day to day basis.
As far as we are concerened here in Torbay to have a Dementia friendly community, it has to include every day aspects of your life, if thats catching a bus, shopping, banking, having a coffee, booking a holiday, having a holiday,going into hospital, Education in Schools, leisure industries and so on. Here in Torquay we are aiming to do this by signing up every business that we can who are willing to share with all thier staff the information we are willing to provide.
This does two things, not only does it educate people and explain to them that Dementia is a degenertaive disease of the brain and should be approached as such and not always AGE releated, (Though it is more prevelant in Older peple of course) but also reduce the stigma that is unfortunatly attatched to this awful diease. I will keep yopu posted, besty wishes, Norrms and family
I for one am witness to what Norrms has achieved! I have followed him from his early days of ensuring a dementia friendly society. Who better to fight this cause than a person with dementia. If only we could all achieve what Norrms has in Torquay….Such an inspirational man xxx
my husband also has early onset dementia we found it very hard to get a diagnoses instead we were told he was depressed and didnt listen .when we finally got the diagnoses it was to late for treatment to slow symtoms he was put on anti psycotics and deteriorated very quickly he is know in a nursing home and i am told that i have to get full time employment which means i will not be able to travel to visit him i am told his illness is no longer my consern after 35 years of marriage this government is forcing me to abandon my husband and i blame the doctors who do not listen when loved ones tell them how their behaviour is changing they seeem to believe only the old get dementia
We need to educate children so they understand what dementia is and then involve schools in the dementia community through initiatives such as reading projects in residential homes and befriending and volunteering schemes.
We need to educate the retail sector NOW so they can provide a better service to people with dementia who use their shops (help to keep people independent for as long as possible). An accreditation scheme such as expansion of the Butterfly Scheme to show when a shop is Dementia Aware, would be great, with a trained Dementia Champion in store who can train other staff and be available if support is required.
We need to educate architects so that public areas are more dementia friendly and accessible.
The Local Government Association has recently published a guide for Local Authorities wanting to work towards more dementia-freindly communities.
It pulls together learning from the work Innovations in Dementia did with Sheffield and Hampshire and provides a tooklit of resources to support the development of dementia-friendly communities at a grassroots level.
It also proposes a conceptual framework for dementia-friendly communities, which can be used as a starting point for considering the dementia-freindliness of our communities.
It can be downloaded free of charge here: http://www.local.gov.uk/web/guest/ageing-well/what-makes/-/journal_content/56/10171/3489459/ARTICLE-TEMPLATE
Money is often an issue in the declining years and all financial businesses need to be aware of customers who may be suffering from dementia/Alzheimers. In my husband’s case, he had an account at Barclays for over 30 years so the cashiers knew him. When he became confused he would go in and ask for money and they would give it to him without any identification or bank card. This became a problem as he did not know what he was doing with it and would either drop it or spend it without collecting change etc so I didn’t know where we were with our finances until I went online and checked every day. I took my enduring power of attorney to the bank along with medical proof that he had early onset Alzheimers but the bank were most unhelpful and said they knew him not me even though we had been married for 35 years but had separate accounts (mine at NatWest).
I was very upset and was reduced to tears twice in their bank and had to convince them to block him from taking out cash as his account paid our bills. I had to leave work to look after him full-time and all I had going into my account was the carer’s allowance. We were both named on his account about a year prior to his deterioration as he agreed we should have a joint account but this didn’t help very much at the time and I had a couple of very stressful months before the staff accepted the situation.
Dear Carer
I may be old and have ‘lost my marbles’ but I am human, someone’s wife, mother, gradmother even someone’s friend, and I too once had a full, acive & challenging life just as you do now.
I’d like to be treated with dignity, understanding and patience, for dont forget you too will be like me one day.
Awareness of dementia should be discussed in schools, both primary and secondary….which would not only make pupils aware, it could also help them and their families cope better if they had a dementia sufferer in their family…
Poole, Bournemouth & Dorset LINks ran 5 focus groups a couple of months ago to gather feedback from carers of older people with dementia.
Our findings suggest that the main issues for carers of people with dementia include:
•the lack of respite care
•the need for better information about the disease including what to expect as it progresses
•the need for more support and training for carers as well as for professionals
•the need for carers to be involved in all aspects of care planning for their cared-for person and
•the need for better diagnosis and support from GPs
Here’s our report, I hope you find it useful: http://www.makesachange.org.uk/cms/site/news/poole/new-link-report-carers-focus-groups.aspx
What could be done to raise awareness and understanding of dementia within communities?
Local promotional campaigns
Improved GP identification, assessment and support
User-led forum
What barriers do people with dementia and their carers face when wanting to participate and access services in their local community?
Transportation.
Availability of peer-led support group.
Cost.
What changes should organisations make in order to become dementia friendly?
Staff training to increase knowledge and awareness.
Organisational champion.
What should communities do to make their area more dementia friendly? Which bodies and organisations should be responsible?
Cleaner, safer neighbourhoods.
Look out for their neighbour.
Local Authority, CCG, NHS providers, GPs, Housing
What should be the main factors to determine whether a city, town, or village is dementia friendly?
The views of people with a dementia and their carers.
Environment.
Access/Use of services.
Support to maintain and enjoy daily living.
Citizens and staff who care and understand.
Services that meet need.
What examples of dementia friendly communities are already going on? What changes or initiatives have made a big difference?
Dementia Support Workers
Peer-led groups
Services working in partnership
Dementia Champion
Here’s a video/song for Alzheimer and caregiver awareness
Bakhus
http://www.youtube.com/watch?v=WuY2_8DWqtA
This without a doubt one of the most proudest moments of my life. Beneath you will find a list of all the shops and Business’s`s that have signed up so far to the Torbay Dementia action Alliance and have been awarded Dementia Aware Badges. There are still many many businesses within Torbay who have signed up to support us and are awaiting information and badges. The three area`s mentioned below are just small communities within Torbay and even though we still have a long way to go, this has been done over the past few weeks by dedicated and willing volunteers who have met these people face to face and explained how we are trying to make a difference to those who have dementia and those loved ones and carers who work so hard dealing with this awful disease. I like to think this proves we are, and will continue to do so for as long as it takes, so we can eventually call Torbay a Dementia friendly Resort. What do youthink ? When you consider every one of these busuiness`s and THEIR STAFF have all been made aware of this awful disease, it really makes you think, Thank you to all concerned and to those i have yet to visit!! LOL
Please click on the link and share with the world!!
TOGETHER WE CAN MAKE THAT DIFFERENCE !!
Very best wishes, Norrms, Elaine and family xxxxxxxxxxx
http://www.scribd.com/doc/100687848/Dementia-Alliance-Sign-Ups
http://www.scribd.com/doc/100687848/Dementia-Alliance-Sign-Ups
Awareness, Education, & most importantly Understanding.
Parents are given paid time off work for the birth of a baby. Paid time off for the death of a loved one, why is it carers can’t have the same rights getting paid time off to care for a sick or dying parent or spouse? My brother has been allowed 6 months off, unpaid. He can claim carers allowance, but he hardly has time to do most things let alone fill in a massive form. I too help care for my mother. I claim benefit and despite being diligent in my mother’s care, my cat sometimes eats better than me. I care more about my dying mother than myself, but it seems its too much to support those who are prepared to give up work, or take a sabbatical. And the government beats on that care is costly? Is it fair that I am described as a drain on the state, and my brother has to live on his savings? The attendance allowance my mother gets is more about paying for agency workers, not family. All the trauma of taking care of and watching a parent or spouse die of a dementia illness is cruel, and sad and painful on the carers part, and many are isolated and living in poverty. Don’t get me wrong, there is nowhere else I would rather be, as I love my mother, but the way carers who choose to care are so unsupported £56 per week is immoral in terms of what carers allowance is, wrong.
And agencies like the district nurses, incontinence team, sociAL services, GP’s, care agencies, communication please. Listen to and communicate with each other. Don’t turn up at a home and look accusingly at carers who lack equipment or knowledge becAuse communication from one department to another has been lax. And anyway this is the 21st century, community and communication is key. Get it right ad there is no longer the it got lost in the post excuse.
Through the use of arts and the creative services Leicestershire County Council is providing a range of resources for people with dementia -see (http://website/index/leisure_tourism/museums/open_museum/artworks/touchtables.htm). The resources have been developed following consultation with people with dementia,with carers and with De Montfort uinversity,thus building in a research dimension to see which approaches are the most beneficial and effective. The touch tables have aready been so popular that we need to commission more and we are currently working to try to secure some Health funding to have more of these creative resources out in the wider community. There is evidence that the arts can really help with stimulating conversation, recognition and creativity through low- cost solutions and often in social settings.. Greater regard needs to be given by Government and funding bodies to this area of work as a mainstream service area for people with dementia and their carers.
Some of the work going on that I am reading about here sounds great – working with poets with people with dementia. My mum has Parkinson’s related dementia. My battle is to keep her at home, which is what she wanted, without giving up my life. She has some brilliant carers, but all she is offered from the mental health side of her care is to go to a day centre where they play Bingo and paint her nails. She was a drama teacher and although she has dementia, still responds to short bursts of music, poetry, and best of all, the carer who brings her dog with her. If I could find any of this in Wales, it would be fantastic, but I just haven’t found it to be available.
One of the major problems that occur is when a person suffering from Dementia is required to become a patient in an NHS Hospital as we found to our cost when my wife, in stage 3, became a patient. Staff would not listen to me, her Carer, or our children as they were “Medically Trained” and knew better than us!!
I must say that my local hospital has come a long way in the 2 years that I have been badgering them about Dementia Care.
They started by running “In House” training and then, after a while, did the sensible thing and brought in Trainers from DementiaUK.
They have done a lot, including introducing a colored tray system which at least ensures that those who are unable to feed themselves are fed.
There are still things that need to be done and what I would like to see made mandatory for all Hospitals is the introduction of the “Butterfly Scheme” which ensures that all those suffering from Dementia and who are in unfamiliar surroundings receive stimulation.
I suggested this to Andrew Lansley by recorded delivery letter only to find that the Royal Mail had failed to deliver. A rewrite and a change of delivery system will soon be underway.
It is not so much a matter of creating a dementia –friendly society – as it is a matter of changing the government’s attitude to the problem. I have sent these comments to the PM, the Department of Health and the Opposition. The responses that I have suggest to me that the problem has nothing to do with them – that is not part of their remit or they send back a nicely produced pamphlet telling me what a good job the government authorities are doing or planning to do.
It was particularly stressful when my husband was first diagnosed with dementia. Trying to cope with full time work so that we could keep the family home, trying to bring up two children and to deal with my husband’s illness was stressful enough but it was made even worse by the inadequacies of the system that was supposed to help.
While progress has been made since the time my husband was first diagnosed, I am not convinced that carers are getting the swift, effective and practical help that would really make a difference yet.
If the government has billions to spare to send to other countries, they have billions to spare for looking after their own taxpayers, so money is not the issue – the problem is how it is allocated.
It costs nothing to empathize with a carer and their patient. It costs nothing to change an attitude. A great deal of time, effort and money appears to be spent on creating a plethora of systems that are intent on preserving their own situation. Advice is offered – but on a large number of websites that have no knowledge of the carer or patient needing assistance. Troupes of managers of health institutions talk about seeing to patients’ and carers’ needs. None of these offer real, immediate and practical support directly in the home of the patient when the carer is first aware that there is something wrong with their loved one. Driven by concerns for costs, diagnosis is delayed, frightened of repercussions, no action is taken by those who have the power to do something effective and the people who are ultimately responsible dither and mumble about how complex and difficult the issue is. Nonsense, I say.
Until everyone who is part of our current system in encouraged to put patients and carers first before satisfying heartless bureaucrats intent on having forms filled and in getting money out of the people they are supposed to serve, none of our current problems will be solved. Words and completed forms do not give a carer a night’s sleep nor show them how to defend themselves when their loved ones attacks them physically.
Nobody seems to empathize with the carer who, if they are to survive by getting help the way our current system suggests, would need time to wade through the information before they could use it, would need the energy and will to explain their circumstances again and again to the different people they have to contact if they are to get the right kind of help or would need to have the freedom to fit in with the helper’s requirements, and schedules. All these things are impossible to do when your loved one is about to do themselves damage, is trying to stop you using the phone or ‘disappears’ out of the house to do possible harm to themselves or others. It makes me laugh when the ‘solution’ is to give the carer choice. When there is nothing to choose from, how can one ‘choose’? Does it help to ask someone near the end of their tether to take on yet another unhelpful task?
When my husband was finally diagnosed, I was asked to attend meetings. This created more stress for me as I had to get a substitute at work and a child carer for my children so that I could attend. I found that many of these meetings were ineffective – nothing was decided and no extra help was forthcoming. When I had something to say, suggestions to make – I was largely ignored – it was as though the people who were supposed to help had their own stressful issues to deal with and could not afford to listen. I am still having the same problems some 20 years later. Early on, I eventually decided not to attend meetings but asked the people concerned to let me know what they planned to discuss at a meeting and then let me know what was decided by letter. Invariably, nothing happened. My lack of attendance at meetings was construed as me being ‘difficult’.
John was moved from institution to institution and then from ward to ward in Fulbourn hospital – not because of his changing needs but because they were closing down the hospital. At one time I tried to contact ‘the person’ who was ultimately responsible for making decisions about my husband. I was on the phone for over an hour and when I did manage to speak to someone I was told ‘it was not their sphere’ or ‘I’m not allowed to tell you’. I believe this situation still hasn’t changed.
[The only person being helpful at the time was Dr Dening who was particularly understanding and the support he gave in his kind words and clear explanations cost nothing extra. He is now Consultant Psychiatrist and Medical Director of the Peterborough and Cambridgeshire NHS Trust. He has written the forward to the novel I have written based on our experiences: ‘John, Dementia and Me’ to be published in November by North Staffordshire Press
In 2006 when John’s ward was closed at Fulbourn he had to be moved into a private care home where he is being well cared for at the moment. Confusion reigned over the funding for his care and with the help of a solicitor we eventually won an appeal and his care home fees are now being paid by the authorities. We should never have had to do this.
The system at the moment creates more stress and worry for carers than it assists them. Patients are ‘assessed’ every year as to their eligibility for care home funding. One year, the patient may be considered eligible for funding for continuous care, the next year – not. These costly assessments are completed by people who hardly know the patients as people. They often rely on care home notes and tick boxes as though the patient must fit into a designated pattern. More often than not, dementia sufferers are unique. It’s bad enough that one has to watch one’s partner degenerate with this dreadful disease – why should we have to put up with such cold indifference and nonsensical bureaucracy?
A kind word costs nothing. Carers need help at home, they need reassurance and complete financial support and if carers were treated as part of a team that properly addressed the needs of their loved ones, it’s more than likely that costs will decrease. If more time and money were dedicated to research into what causes the disease and treatments that can ease the symptoms , to training people (for free) to care for patients with dementia (in individual’s homes, care homes and hospitals) and to offer immediate and practical support in the home and less on ‘meetings’ and making demands on carers for money and to fill forms, our loved ones would get the help they deserve (and expected when they first started paying their ‘National Health Insurance’).
Those who are involved in the system and are supposed to help carers are not the ones to blame. Many of them do care, but are equally stressed and frustrated by an uncaring system. They are only ‘doing’ their job as instructed by those ‘above’. The buck stops with the government – the politicians who are supposed to represent us. I find it incredible that there must be a number of politicians who have experienced the system for themselves and yet have not done anything about improving the situation. Recently they could not even agree on a cap for care home charges. Where there is a will, there is a way. If they were really intent on helping carers, they would have come to agreement, no matter how long it took. Again, why are they discussing money, when they should be discussing care? The two do not necessarily go together. Throwing money at a huge institution rarely improves the lot of the families reliant on the institution for help.
The best help I received was from a friend who was paid nothing for the times she sat with my husband, had him to stay when respite was needed or chivvied staff in the various wards to take practical action to help my husband. The best advice I was given was from someone who left her job working in social services and was frank with me – agreeing with me that the situation was dangerous and that I should prepare to leave the home with the children and stay at a friend’s place so that I could phone the authorities and insist they help my husband who was alone in the house. None of these cost any money nor were they initiated by ‘the system’.
To sum up, what we need is:
• A change of attitude
• Free psychiatric nurses on regular home visits to patients
• Free training for volunteers, carers and staff
• Fewer meetings and more immediate, practical assistance
• Less form filling
• Free care for those who have paid National Health Insurance
• More research into the disease’s causes and treatment
• The government to accept responsibility for making these changes NOW …
Rosemary Westwell
i agree, we would like to concentrate on quality time with jim for as long as he has left, but due to all the finacial worries assesments, paperwork, and delving into personal finances and chasing those who should no what they are doin, it becomes an impossibility!!!
I hope this campaign isn’t just about adapting to dementia but is also about prevention. Research shows that exercise in middle age to promote a healthy cardio vascular system and encouraging education and learning through the lifecourse to promote cognitive reasoning can significantly reduce the chances of dementia occuring. The priority should be to slow or arrest decline. The heritage and arts sectors have developed excellent methodologies around reminiscence work for example which can stimulate memory, encourage people to speak and has the added advantage of encouraging carers to see patients as whole people with life stories and dignity, reminding them that not only has this person not always been in this fragile state but that this might well be them someday. It’s also important to promote social networking, encouraging people to join clubs, societies and continuining education, or to volunteer. Employers need to be encouraged to see the value that older people can bring to their organisations.
Have spent last ten years caring for an aunt, an uncle and my mother at home and in various homes. My aunt had vascular dementia and it took a long time for diagnosis and treatment. Subsequently she was in an understaffed mental health unit of mixes sex , all ages and many off medication because it was being assessed. She was attacked and very very frightened and became very agressive herself.
My uncle died in the street partly because the carers couldn’t give him his heart medication while the hospital and the doctor were arguing about blister packs for his galantimine and partly because of lack of understanding by caring neighbours who thought he was better than he was.
My lot of my mother’s friends did not understand her behaviour and stopped going to see her. She refused anyone but us taking her out. She became unsafe to leave and wouldn’t live with us. She is now is in a very caring residential home and very happy with company and old hobbies renewed.
I feel that if families and dementia sufferers had a befriender or nurse like the cancer sufferers have macmillan nurses and sitters it would relieve a lot of anguish. Respite care should be free and easily obtainable. There should be hospice-like places for people and initially their carers too.
Provision of such would highlight the number of people who have dementia and that it is as traumatic as cancer to the person and the family. I do understand that this costs far too much and will take a longwhile to establish. Dementia families are short of the energy and drained of funds to support in the wonderful way cancer families do.
Right from the grass roots is needed ;If there was a network of local people/firms who had been given training: some to assess the safety of a home and garden,some to manicure nails and hairdress ,some to watch the diet and shopping, working as a team. Local groups could have coffee mornings and sing-songs.,
There is a good link with the local junior school to the local care home and the children sing and are sung to . They listen and don’t seem to mind the same questions over and over..
People such as us whose retired lives have been saturated with caring for relatives with dementia and organising their finances and care do not have the energy to organise local awareness and need to re-build their own relationships.
Carers for people with dementia have little time to go to places. Whether they can get is often unpredictable so help needs to be on tap.Groups such as Woman’s Institutes, Mother’s Unions, religious groups and Rotary clubs could highlight dementia in the talks they have and the fund-raisingwork they do. So many good volunteers needed.
Pre-booked respite is so hard to find perhaps there could be a clearing house for local help.
A nurse like cancer sufferers have Macmillan nurses and carers /people who befriend them and volunteer to sit with them or to take them out would have been marvellous.
Personal one to one education and support for the family would have been great. We had a very caring but very busy consultant but no-one with understanding.
If i won the lottery it would all go on setting up care for dementia sufferers as much in the local community as possible but with protection for both !!
Each case must be treated individually as each person is an individual. Better assessment of carers needs and abilities is needed. Sounds expensive but it is the only way to go. Ticking boxes is not caring.
This needs a longer term approach and not just a fix for the immediate or short/medium term. We need to start with educating younger people, perhaps as part of a wider educational programme of health issues.
For example, how about developing some short films and using these to facilitate discussions in a range of environments, but starting in schools and colleges. This will start generating discussion and hopefully more Dementia friendly attitudes amongst our wider community. The real key is in breaking the prejudices that make those with Dementia vulnerable, especially those at the earlier stages of the disease, who are still living within their own homes/communities.
It will need funding and it will need good facilitators, but if there is space on the educational curriculum for this kind of education (there used to be via what I think was called social studies), then we could have a comprehensive pack that accompanies the video to enable teachers/tutors to facilitate the discussions, after all, most of them have the skills to do this.
The idea may be imperfect and is certainly not the whole answer, but I firmly believe that there is a need to start challenging attitudes at a younger age and this forms the backbone of a longer term strategy, which is then complimented by the more immediate, short and medium term solutions.
I experienced dementia through my grandfather who suffered from the condition for around 5 years before his death last year. Here are my thoughts:
- In raising awareness of the disease within societies, I think it’s also important to dispel a lot of the stigma surrounding it. Sufferers are still people who react to certain memories, food, music, faces and society shouldn’t give up on them even when they reach the stage where they are happy in their own little worlds
- Working with families/friends/carers is key – make them feel included in their loved-one’s life
- Organise events which involve young and old – so those with dementia get the benefit of socialising with enthusiastic youngsters, and young people get to interact with the older generation who, even when they suffer from dementia, have a wealth of stories to share.
- Consider therapy with animals – some studies have shown that being in the presence of cats, dogs or horses can provide much needed interaction. My grandfather kept dogs all his life. He didn’t know who I was for 4 years but I once went to visit him at the home and took my dog with me. You should have seen his eyes light up when he saw my dog and he spent the whole visit holding and stroking him. Other patients also came up to us and showed a great interest in the dog. It was a great moment that I will never forget.
- Much has been discussed about the power of music and dementia – creating environments which patients may regress to can surely help make them feel comfortable and at home.
- Also, enabling patients to stay at home if that’s what families want – rather than having to send them to a home because there’s no other option. My grandmother would have loved to have had my grandad at home, but she was too old to look after him and the local authority couldn’t provide necessary support at home
- In care homes – keep patients stimulated. Sitting around in a quiet room would deteriorate my health let alone people who already suffer from a debilitating disease
I would like to see more resources destined to dementia research. If we all together push for more research into Alzheimer’s and Parkinson’s disease, we can soon start changing the life of millions of people in the UK and around the World.
Obviously as per other comments, research is very very important. I also think that depending on where you live the help you receive is very different. After just loosing my mother recently she had this illness), and talkinig to people who have cared for relatives with dememtia, a common theme seems to be the lack of liason between GP’s, Social Workers and other authorities. The only helfull advice I received was from your web site and the Admiralty Nurse. Not everyone has access to either of these services and a referal from a GP once diagnosed with dementia to either of these services might be helpfull for carers.
Thank you for the information your web site gave me in my mothers last days.
For many Black and Minority Ethnic Communities where respect for all the elders in the community is a strong tradition, there still remains poor understanding of dementia and stigma about mental health issues prevents people from looking for help and information in the early stages of the illness.
Two years ago I was the Dementia Implementation Lead for Commissioning Support for London and as part of this work produced an information and resource pack to help commissioners take better account of BMER communities’ needs.
More recently I have been looking independently at ways of professionals and non-professionals participating in a dialogue of mutual concern and support around dementia and its impact on Black and Minority Ethnic Communities, for example through social media platforms. This for me has the potential to cut through some of the limitations in resources and the separation between professionals and communities to create influential communication networks that can start to make things happen.
Isolation is not only a frustrating for individuals living with dementia and their carers but can also be a frequent experience for professionals trying to find out more about how dementia how impacts on Black, Minority Ethnic and Refugee Communities, or find basic information and resources tailored for these communities or very simply find someone to talk to about starting a support group, creating greater awareness, working out what good care looks like, etc., etc.
What’s needed is support for alliances to be built of people who understand the issues from the ground up to have access to the levers of influence (e.g. politicians and commissioners).
What could be done to raise awareness and understanding of dementia within communities?
Lots more publicity, in every way possible. It needs to reach the younger generation too, since before my dad was diagnosed, I had never heard of it. We need more people to understand that it is not simply a case of a person in their 80′s forgetting peoples names- that is pure ignorance. If ignored it can be very dangerous for the sufferer and others around them, for example a sufferer living on their own may leave the stove on, go wandering, drive the wrong way down the motorway etc. We need communities to be communities- looking out for the neighbours. I dread to think about all those who are living alone, undiagnosed. I would also like people to be aware of the fact that it is WORSE than cancer, since it is terminal. At least with cancer some can get better, with Alzheimer’s no-one does. Some have even described it as a fate worse than death, due to the fact that physically the sufferer is still here on this Earth, but mentally, they are not. Hopefully, with more awareness, more people will donate to Alzheimer’s charities (as cancer is receiving 3x more money than Alzheimers) which will allow for more research and hopefully a cure. People who work with a sufferer need to understand more and need more training (in my opinion). After having sitters come to look after my dad for a few hours, we discovered that after having long shifts, one fell asleep (leaving my dad vulnerable to go wandering) and others not getting here on time as they are not allowed travelling time. Worse than this, the last time my dad was in respite (which was a hopsital, since my dad is young, and fit, so they couldn’t cope with him in an emi care home, there were no available emi nursing homes available), he was found to be chewing a piece of plastic, and the staff did not attempt to get it out of his mouth, and so they left him to chew this plastic in the night whilst sleeping….he could’ve choked! The staff tend to be lazy staying with the permanent residents who stay sitting down for hours, whilst the ones who walk about, are left unattended to go through the bin in the toilets.
What barriers do people with dementia and their carers face when wanting to participate and access services in their local community?
Prejudice. Using public transport can be a nightmare. Some of the drivers are understanding, while others always seem to be in a rush- even if no-one else is on the bus! Lots of people stare, which is so annoying, some make comments, but most, due to the lack of understanding, say stuff like “Is he any better?”. Simple things like going shopping can be really frustrating as my dad is prone to touching and picking things up, but because we do our shopping in the same place, not many people mind. If you are going further afield, you have to make sure they have disabled toilets (for the incontinent) which again makes people stare.
What changes should organisations make in order to become dementia friendly?
All public transport drivers should be trained in dealing with a dementia sufferer, if for example, a simple bit of patience is involved, or if a sufferer gets on with no money, gets confused etc. Same for shop staff, and more disabled toilets. Sitters should be allowed travelling time, and residential staff need more training and do their jobs better…or an easier way to report them!
What should communities do to make their area more dementia friendly? Which bodies and organisations should be responsible?
Apart from having more clocks, maps and signs, especially in big cities, the only way you can make a community more dementia friendly, is by raising awareness so that if they see a person in town wearing slippers and they seem confused or lost, ask if you can phone a relative, or drop them off at their house, or worst case scenario, police station. Apart from having all staff in shops and public transport trained to deal with dementia sufferers, the police should take more responsibility, looking out for those at risk. When it comes to wanderers, I find the police to be very slow trying to find them…raiding the same house 3 times, when the sufferer was seen walking down the road, away from the house several hours before? In fact, it was even the police who found the sufferer, but a relative.
What should be the main factors to determine whether a city, town, or village is dementia friendly?
Clear signposted areas, large town clocks, maps, trained public transport drivers, and shop staff, more disabled toilets, better trained police and more people aware of dementia.
What examples of dementia friendly communities are already going on? What changes or initiatives have made a big difference?
Can’t think of any apart from there were more advertisements about dementia and more programmes/soaps highlighting dementia. In my area, they did run meetings for carers to discuss issues, but since only 2 turned up to the last one, I doubt they are still running.
We need to get the right resources to allow the person with dementia to remain at home for as long as possible, enable them to stay mobile and access their community thereby improving the quality of life for all those affected by dementia.
I believe that everyone should be treated as an individual but we must appreciate that the person with dementia has individual needs and requirements too even if they cannot express them so a blanket approach to this illness is not appropriate.
Llistening to the carer, they are probably living with the person 24/7 and know what is required but very rarely are they asked what would make their lives simpler so I fully support this initiative of involving carer’s feedback.
Involve the pharmacies, as very often they build up a good rapport with the patient as a point of contact. Develop a training manual kit of things a carer needs to know and provide guidelines after all you would not expect someone to carry out a job effectively and efficiently without the correct training the workplace as they would be a risk especially health and safety so why expect it of people who wish to have their loved ones remain at home.
All of the organisations dealing with people affected by this terrible illness need to be pulling in the same direction, and not trying to outdo one another, collaboration is key until a cure can be found. Having fact sheets which include all of the information someone should know and not be told, if you had asked the question we could have helped but if you do not know the question to ask it may be too late when you do need an answer.
Most important of all is seeing the person first and the dementia second most people seem to forget this simple concept. If required I am more than happy to expand on my views shared above.
Somebody necessarily help to make severely articles I might state. That is the first time I frequented your web page and up to now? I surprised with the analysis you made to make this actual post extraordinary. Great job!
I think a great idea is an accreditation scheme for companies being dementia friendly. This would involve perhaps having certain policies in place, basic training for staff, at least one change to become more dementia friendly. Once companies have done so the can have a logo on display, this would encourage some level of competition as businesses wouldn’t want to be this accreditation if many others have it. It also mean that they actually have to do something to get it.
The forget-me-not flower would be the perfect logo for this as it is used internationally for dementia. It is a symbol that is not being used wnough in the uk and has the potential to be as recognised and appreciated as the Marie Curie daffodil.
Look at Switzerland and Holland’s Demntiaville communities for inspiration. We look overseas for ideas on things like student loans and student fees. How about looking at Dementiaville communitutes and how settled and happy the residents are living there and build our own.
Student loans and fees are one of the worst things that has happened to this country. As for “Dementiaville” well I’d have to see it for myself to believe it. Living with my dad, who has had Alzheimers for at least the last 5 years, he is unable to communicate effeciently…so if he does remember something (which we doubt) then he has no way of communicating it to us. How many people would be able to effectively use these type of communities? What happens as the disease advances, and they can no longer remember things? Would it be worth all that money? However, I agree that the care system over here is rubbish and needs improving, and currently leaves relatives of sufferers often feeling worried, I’m just questioning the effectiveness of dementiavilles…since my dad probably doesn’t recognise me, or my brothers, my mum or even his own sisters, what use would a place like that be to him, and others like him?
we need more for early onset dementia sufferers especcially at the young end of the range my friend who is just 40 went along to a early onset group and the youngest people were in their late 50′s I realise he is probably an exception but he is still a suffererbut 20 years is a big gap and I cant believe he is a lone example
also we need to break down peoples misconceptions and prejudices people expect everyone to be final stages because that is what is normally portrayed
we need short residential courses where EOD sufferers can inspire each other
At the moment obtaining care for dementia sufferers is a post code lottery.
Some areas have support from Admiral nurses or similar while others lack any form of support.
There needs to be a National organisation staffed by qualified nurses who are specialists in dementia. They should act as health visitors and make home visits on a regular basis. In addition they should provide information by means of talks to schools, the larger stores and community groups.
Hi for me it’s about raising everyone’s awareness of dementia and it’s effects on families and individuals but getting the message across to alert everyone about early on set. This is a devistating illness but it doesnot only effect the elderly population my husband is 49 trying to get a diagnosis is a real challenge in its self and is a very long journey but people we know and our family members and our local community have no understanding so when my husband says something which may be inappropriate or lacks empathy he’s not given any understanding or compassion. It’s time to stat talking to everyone old and young and employers to make sure that they have the knowledge and awareness to help people with this illness. S
many of the dicussions ,joint workshops that i have attended over many years have been focussed upon improving the internal communications and coordination of care for Persons with Dementia across Health,Social Care and Third sector.Laudable as that ambition is, it is long overdue that Health and Social Care professionals should actively engage and spend legitimate time with Local employers,industry and Education, as the objective of a “dementia Friendly community” is truly everybodies business.
Chris
Dementia friendly communities need to be places where everyone wants to live, whether they have dementia, are caring for someone with it, know someone with it or have never encountered it but, through the drive for dementia friendly communities, understand the importance of accommodating, enriching and nurturing people who are living with dementia now or will do in the future.
Raising awareness requires education at all levels of society, harnessing local and national services, organisations, groups, businesses and media in a common goal of informing, supporting and enabling people with dementia and their carers to lead lives with quality and richness.
At the heart of all awareness campaigning, policy making and implementation must be people with first-hand experience of dementia. This is the only way to appeal to the hearts and minds of the wider population and create real and lasting change.
We need to eliminate the postcode lottery for services, implement UK wide information portals that help people with dementia and their carers find out what they are entitled to and access services in a timely fashion, put a huge emphasis on providing therapeutic dementia care, and improve access to design and technological advances in dementia.
Currently the most simple, everyday tasks can be problematic for people with dementia. Businesses and service providers need to train their staff in providing help and support to people with dementia, think about ways of making their premises more dementia friendly through signage etc, offer specialist help with menus, toilet facilities, financial transactions etc, and look at ways of preserving dignity and respect for customers with dementia at all times.
As a country we need to understand the importance of personalisation, compassion and dedication in the way we care for people with dementia at every stage of their journey with this disease. An appreciation that dementia isn’t who someone is will go a long way towards this, and it is vital to get that key message across.
However the dementia challenge evolves, please put passion and drive at the heart of it, so that we can make a genuine difference to the lives of people with dementia. My father had vascular dementia for 19-years, and nothing matters to me more than seeing the reality of living with dementia in the UK change into something that we can all be proud of, and that the world will want to learn from. I write on all aspects of dementia care at: http://d4dementia.blogspot.co.uk/
I have commented before (above, back in May) and in a recent focus group for this consultation. However, I just wanted to add a couple of things here:
In general I think there needs to be greater awareness that dementia is not just a “memory” problem, but a wide-ranging syndrome of cognitive disorders which mean that a person has difficulty reasoning or understanding instructions, interpreting and processing information and may have distorted emotional or sensory responses. Much of “dementia awareness” in the media tends to focus solely on the concept of “memory”, giving the impression that the issue can largely be solved by reminders, gadgets, and routines. I would like to see a wider appreciation of cognitive disorders (and how they impact on daily life), delusion, paranoia, and the challenges of personality change.
I also agree with respondent Isobel above (25 & 29 May) that there are some behaviours that are extremely difficult for carers to manage in the community, no matter how much you try to espouse “person-centred” approaches, and that there are times when it doesn’t help to deny that the person has become at risk to themselves and sometimes to others as well (and not just to the carers, as Isobel points out, sometimes to total strangers or repeatedly to friends, neighbours, or formely trusted workmen).
Of course it is positive to try to educate the whole of society in how to accept and deal with such behaviours with understanding and compassion and to continue to treat the person with love and respect – it may come to us all at some stage. But it is also part of that education to admit that there are things about the condition that are genuinely and irrevocably difficult and that carers, as well as the person with dementia, need support.
On the practical level, here are a couple more specific things:
Town planning: devised by the young and able-bodied with the assumption that all users have the same priorities and capabilities. Pedestrian precincts, for example, are always presented as “a good thing”; however, they may not be for those with dementia or other impairments. A brisk two-minute walk to a person of able mind and body may be nothing – but if bus stop, car park, and taxi rank are even this distance from the shops, those with dementia may find it disorientating and frightening to negotiate unaided or even with help and carers cannot leave them alone to go and park/fetch car. Thus options for socialising or even essential shopping become severely limited to places immediately accessible by parking directly outside or drop-off by taxi. This is obviously even worse for those without access to a car or who cannot afford taxis.
I would say that pedestrian precincts also disadvantage the physically disabled and mothers with young children, who also find it hard to negotiate transport when drop-off points are not immediate to facilities; and that even for the middle-aged or single, such precincts can become menacing when shops close (even in late afternoon/early evening), when lack of through traffic gives them over to roaming packs of (often drunk) young people.
Lifts and exits: many public buildings and spaces are mindful of disability legislation but interpret it primarily with physical disability in mind – i.e. wheelchair-users and to some extent the blind or deaf. However, people with dementia may be fearful of lifts and enclosed spaces or confused by escalators and bright or flashing lights. Public spaces need clear, accessible fixed staircases for those who cannot use such mechanical aids.
I have stayed in a new-build 5-star hotel celebrated for its design that had no public staircase for guests – had to take my lift-phobic mum down the steep and insalubrious concrete service stairs which of course had no signage, as not for public use. The local Cineworld in my mum’s town also has no public fixed stairs apart from fire exit (and is a walk through a pedestrian precinct from the car park), which meant that we had to stop going there.
Many cinemas, shops, and shopping malls also try to herd customers into lifts or escalators for commercial or cosmetic purposes while making fixed stairs deliberately obscure to discourage use. Similarly shops are often designed for the shop’s benefit with easy ingress and obscure exit to encourage sales and discourage shop-lifting. People with dementia are often doubly confused by signage (or lack thereof) and may be panicked if they can’t find their way out of a building.
There are many other everyday experiences (such as automated call services, as mentioned in my previous post) that are similarly challenging for people with cognitive impairment. Society needs to give as much consideration to these conditions in practical terms as to physical disability.
In East Lancashire we recently ran a project where people who had been fairly newly diagnosed with dementia were asked if they would like to volunteer to contribute to the history curriculum of a local secondary school. The project’s aims were about encouraging a continued sense of purpose and belief in their ability to make meaningful contributions and promoting heightened self-esteem at a difficult time. It was also hoped that pupils would benefit by having their history lessons ‘brought to life’.
Volunteers were then supported to provide oral history lessons to year seven pupils at the school. This project was unique because it was built around people with dementia, a group often excluded, with the belief that their difficulties will be hard to accommodate or that they will be unable to make a meaningful contribution. The pilot project was evaluated and it was found the benefits included that volunteers’ felt more connected with young people and with their communities. The year seven pupils had their eyes opened about how different life was not so long ago and their perceptions of older people were improved. “I didn’t know they were this interesting. They tell really good stories!” (Pupil)
I’d love to see this type of project properly rolled out across our area (or even across the country!) to build dementia friendly communities.
I am a member of a campaigning volunteer group in the Midlands, and the creation of a dementia friendly society is one of our primary aims. We believe that one of the best ways forward is to establish contact with various social groups and to get them involved in meeting the challenges posed by dementia.
Being chair of my immediate Neighbourhood Watch Group, I saw this as an opportunity to talk to my neighbours about it. To make sure that absentees were not left out, everyone is getting a copy of Worried about your Memory with the next newsletter. I am due to speak to another larger district group next week, hopefully with members of the local council and police present, which may create further openings.
Several weeks ago I was asked if I was interested in joining a local Rotary
Club. I was a guest at a meeting last week, and see this as another means of getting the message out, there being over 60 similar groups in the West Midlands area. We are also awaiting an invitation from Warwickshire WI, which has over 100 branches, to attend their annual audition of potential future speakers.
My talk has been approved by my local Alzheimer’s Society branch. First, the audience is presented with my background in caring 24/7 for my wife who has since passed away, and my voluntary involvement including being a member of our county Demnetia Strategy Board. They are then told of the numerical challenge facing all of us right down to community level. This includes improving diagnosis rates, and the advantages of receiving it early.
We then tackle the ways in which individuals can get involved by recognising symptoms among family, friends, and neighbours, and with tact and discretion persuade someone to see their GP and not to take no for an answer regarding a memory test. I do stress that we do not want to create a society of dementia vigilantes who see every “senior moment” as a potential case.
The audience is also told about different types of dementia, and how the two main types affect the brain. The two main fears of people confronting dementia are dealing with memory loss and mood swings. They are told how to go back in time and how to be proactive in minimising the frustrations which cause mood swings. Hopefully this will give them confidence in offering help and relief to beleaguered carers, if only for a short period. I know from experience how valuable some “me time” is when caring.
So far, it is early days. I would like to see contact made with councils, police, fire and ambulance services. Also local shops and transport companies should be targetted, to name but a few. Alzheimer’s Society volunteers are thin on the ground and difficult to recruit. If this campaign is to succeed, more will be needed, so there should be a campaign towards that, aimed at where numbers are low.
One area I have not touched on is getting GP’s on board. Most people, if they suspect something seriously wrong with them do not like seeing a doctor. A piece by a professor in Scotland in a recent APPG report on diagnosis rates suggested that rates increased when people went direct to a Memory Clinic. It may be worth considering. I do believe that anyone concerned about their memory should take someone with them for reassurance when visiting a GP.
I sincerely hope that the above is seen as useful in the campaign.
Tony Robinson
Nuneaton, Warks.
Earlier diagnosis is essential – screening after a certain age as in breast cancer etc? This could means that symptoms are treated at an earlier stage and patients can live a normal life in the community for longer.
There should be less stigma to having the condition – dementia sufferers and their carers are currently treated as second class citizens. If carers want support they are put on the bottom of the pile – lack of respite places to help hardpressed carers. The truth is having dementia currently means paying an extra £200 for a care home. Dementia is an illness not a lifestyle choice
One month ago my mother moved to St Catherines View Dementia home in Winchester. She is 91 now and very unwell.
It is essential to change as a society and also as individuals because of dementia. But one area that may not be obvious is spirituality, both as a way to reach out to people with dementia by understanding this is perhaps something beyond our normal grasp of mind and body, but especially as a way for each of us to avoid or reduce this terrible disease for ourselves.
Suddenly I feel how important it is for me to keep not only my physical body well, to avoid problems later, and also my ability to think clearly, perhaps with puzzles or challenges, in both of these I need to keep working out as it were. But the fear, of death, and beyond, MUST be resolved and as far as possible replace by serenity and love while I am still able to open that box of stuff that I, and others, have refused to allow into out busy daily lives. It is our personal fears and memories that determine the quality of how dementia affects us.
Some of the residents in St Catherines View are joyful. But many have times stuck in a personal hell of fear. What makes the difference? To some extent we can practice being joyful or cheerful, feeling love instead of fear, but truly the expertise in all of this is not with scientists, and not with academics, or politicians. The expertise we need is in the wide range of spiritualities and their specialists. Whatever your personal faith, and I think many spiritual leaders today embrace the sincerity of other paths, having a sincere faith for yourself and also having public times to become at peace with yourself and your eventual death, suddenly I see this may be the core for resolving the dementia curse.
I notice the Archbishop of Canterbury is retiring soon. I wonder if he has the time or desire to become a focus for a multi faith and joyful resurrection of spirituality in our daily lives, not because it is a debate for truth, but because without that heartbeat, individuals who later have dementia seem to suffer a personal hell, and this can be surely avoided if spirituality, in all the spectrum of choices, were to become popular again.
Make it compulsory for Gp’s to follow NICE guidlines for the prescribing of Aricept. I had to insist that my mother -in-law be referred for a memory clinic assessment despite her mini memory test score of 25.
Home follow ups and support after diagnosis of Alzheimers are essential and should occur as a matter of course.
Better support for carers, following diagnosis we were left to fend for ourselves. I do not think it is good enough to be told “Oh seek out The Alzheimers Society” even though they do a great job.
I cared for my mum for 12 years, until she passed away in January aged just 71. For the last 4 years of her life, I gave up a well paid job to care for her full time in my home. Financial struggles and worries only add to the stresses of a carer – it is absurd that you can have direct payments or other care support yet recieve only £55 per week! Caring for a person with dementia takes control of your life. I refused a lot of the help offered, I thought I could struggle on alone….I did & I don’t regret it for a minute but if professionally trained bodies were offered to support me, I’d have accepted. If financial support was offered, i’d have accepted. Extensive training should be given to professionals ranging from support workers, to hospital staff, to GPs on how to deal with sufferers of dementia and their carers. I also feel that employment agencies should be more flexible with carers. Having not worked for over 4 years, I am struggling to find employment. Although it is extremely frightening for me to try to return to a normal environment again, I have applied for jobs that – despite my qualifications – have turned me down as I do not have employment history for the last 2 years!!
As an ex- carer, i can now reflect on how my outlook and perspective was back then. This has inspired me to start a Dementia Carers Support project in my borough, so hopefully I can help support other carers. If only I could get paid employment doing this!
As the national umbrella charity for palliative and end of life care, we have welcomed the Dementia Challenge and commended the Prime Minister on putting the weight of his office behind efforts to improve dementia care and research. We were particularly pleased that the government has committed to giving palliative and end of life care a significant place within the Challenge, as people with dementia approaching the end of life are amongst the most vulnerable in our society.
Societal change is a key part of the ensuring people with dementia are positively including in communities and experience the best possible quality of life from diagnosis to the end of life. As such it is right that a dedicated Champion Group has been set up to take this forward and the public consulted in its activities. This group will have a key role in promoting ‘dementia-friendly’ communities and sharing examples of good practice, but action is needed on the ground by individuals – including local employers, businesses, decision makers and members of the public – if we are to make this a reality. There are several examples of where this is already happening (for example in Hampshire) and this should be extended, rather than duplicated.
We would also urge the Champion Group to consider some of the additional barriers to achieving the societal change it wants to see. This might include people who are living with dementia and:
- Are in the advance stages of the condition and/or life, have multiple conditions, and/or are very frail (noting that 1 in 3 of people die with dementia)
- Living alone, in a remote community or are otherwise physically isolated (this might include those ‘hidden’ in residential care too)
- Are in a ‘hard to reach’ group, for example they are lesbian or gay, or speak English as a second language
- Have a sensory impairment (or multiple)
These additional barriers need to be specifically considered by the Champion Group and examples of good practice identified and shared.
Both short-term and long-term measures should be considered. For example, looking at the kinds of environments people with dementia live, and the extent to which this is compatible with the idea of a dementia friendly community, alongside more short-term measures to raise awareness and change behaviours within the limits of existing communities.
The impact of housing on people’s wellbeing cannot be overstated. We would encourage the Champion Group to look at models of creating new environments for people with advanced dementia and those approaching the end of life. One example is the Belong Village in Wigan, which has extra care and care homes on same site, with people able to move from one to the other as their needs increase, but still be somewhere familiar. Social isolation is a significant barrier to creating dementia friendly communities, and this needs to be factored into town planning in a more consistent way. For examples, care homes can become isolated if they are built on the edge of a town. Measures can, and in many cases are, taken to open up care homes to the local community, but this task would be easier if thought is given to this at an earlier stage.
In some cases there will be awareness campaigns already working on these issues, for example the Dying Matters coalition which has 17,000 members improving society’s approaching to dying and bereavement (www.dyingmatters.org) and the Campaign to End Loneliness (www.campaigntoendloneliness.org.uk) to create personal connections in later life. These initiatives are broader than dementia, but are very relevant to people with the condition and their families, so joint working will be necessary to avoid duplication.
This will help to ensure the Dementia Challenge leaves no group of people with the condition untouched, and ensure it is successful in bringing about the change we want to see.
The following comments are a summary of feedback from people with dementia and carers in Barnsley, South Yorkshire; they where asked to respond to the six Creating dementia friendly Communities questions and suggested that:
More needs to be done to educate Shop keepers/assistants, restaurant owners/ waiters particularly in relation to allowing sufficient time for people with dementia to make their choices.
We need to be talking to community groups/ schools/ churches to raise awareness and understanding of dementia
There is a need for more get togethers for people with Dementia and carers to provide more peer support
Unisex changing rooms in shops would be helpful so that spouse’s and carers of diffrent genders can offer assistance
Issues on public transport need to be addressed especially in relation to the ignorance of school children
Organisations and businesses need to offer more time and understanding when providing services; Utilities providers are particularly lacking in understanding
Staff from large organisations ought to be come involved with Dementia social events so as to raise their awareness
Buses ought to have someone who will help like the old conductors
Banks should have private areas when giving private and personal information
There should be much more Dementia awareness training for all staff across all sectors
Maybe to have people with dementia ( Champions) to go into businesses and organisations to help train staff to be more understanding
All places should be Dementia friendly and accessible
Everyone is responsible for spreading the word about Dementia
People should help each other more and people who need help should be able to ask for it ( Good Neighbours)
Councils, Churches, Doctors Surgeries and Clinics should all take responsibility for creating Dementia Friendly Communities.
A dementia Friendly community will include you feeling good when you get help with your shopping
It will involve everyone looking after one another, getting to know one another in a village so that others can help.
Dementia Friendly communities will include visible literature to publisize the need for total care and consideration
Dementia Friendly Communities will be places where everyone communicates openl.
The kinds of initiatives taking place in Barnsley include:
The Alzheimer’s society have secured funding to establish a one-year Locality Development Officer post to set up and support a Community Dementia Forum in the borough. the purpose of the forum is to bring together people with Dementia, carers and professionals to talk about and influence agendas surrounding Dementia Friendly Communities.
In the space of 5 months, we have established beneficial networks and partnerships to share good practice in relation to the training of Dementia champions in a variety of settings.
The forum is attracting professionals from all sectors including those that have not traditionally specialised in Dementia: e.g. Citizens Advice Bureau, Barnsley Premier Leisure, Housing associations, Barnsley Football Club and Parish Councils.
Benefits of the forum also include sharing of information and members of the public being able to network directly with service providers.
findings from forum activities are being fed into a variety of strategy groups including the Multi Agency Dementia Monitoring and Implementation Group and the Inspiring Volunteering Strategy Group.
The ultimate ambition of the forum is to embed the creation of Dementia Friendly Communities into all of the activities and developments being undertaken in Barnsley.
Person centred care should be at the fore front of supporting those with dementia. Many people involved in the care of older people with dementia have not received the right training and this should be a must.
Providing services that allow those with Dementia to stay involved as possible and as long as possible, this allows those with dementia to be actively involved in the community and shows that people with Dementia can live well and life does not stop.
Also having more integrated services between health and adult social care as sometimes they are disjointed.
Local communities are not aware of early stages of dementia and unlikely to reactive a diagnosis as some might associate as part of getting older. Therefore, raising awareness of dementia, what it is and how it affects people to try and reduce stigma of dementia would help.
I am a former carer who with my wife looked after my late father who had Alzheimer’s.
How can we create Dementia friendly Communities?
Learn about the disease and how to care for some one. Be bold and adventurous as far as possible, don’t hide away and help the person with dementia remain to a ‘player’ as long as possible.
First step is to get an early diagnosis from the GP and to get them to prescribe drugs to slow the development of the disease.
The GP should also arrange for the carer to go on a one day person centred care course.
We went on a Person Centred care course designed for social workers. It was the single most useful thing we did in the six months following my father’s diagnosis. It got us to understand the disease and realise for the person with dementia the ‘facts’ get blurry but their emotions remain. By understanding this it made it easier for us to look after him. Going on a course means this aspect of social care is learnt, understood and shared with others in a group. A booklet is an impersonal and lonely way of learning about dementia. It instructs but can’t share.
Having got the carer up to speed there is the need to conserve the social circle by quelling the fears of family and friends about dementia. ‘Prompts’ about the person with dementia can provoke memories and stories to keep people engaging and to help the person with dementia retain their sense of self.
Through my experience I created MindDIce (www.minddice.co.uk) a 12 sided dice with prompts to help family friends and carers to engage with my father.
Friendly Communities need this knowledge on a micro level; street neighbours, local shops, café, library, pub. Local knowledge and understanding of the situation could be the basis of maintaining people in their own home amongst what is familiar to them. Perhaps local councils could provide the person centred care course to neighbourhood/ residents association with a view to looking after a particular person with dementia.
Friendly communities also need to be supported by ensuring other institutions such as the Police, ambulance service, meter readers etc are up to speed and have an understanding of dementia’s symptoms and behaviour and are able to respond appropriately.
Perhaps Pub chains such as Wetherspoon’s or the like with large pubs and reasonably priced food could provide dementia friendly havens. It could lead to a wider understanding by ensuring people with dementia are in contact with the wider public who in turn can learn.
Finally do not to refer dementia as a wicked disease. This simply frightens people away when Dementians and carers really need them to engage.
I am a former carer who with my wife looked after my late father who had Alzheimer’s.
How can we create Dementia friendly Communities?
Learn about the disease and how to care for some one. Be bold and adventurous as far as possible, don’t hide away and help the person with dementia remain to a ‘player’ as long as possible.
First step is to get an early diagnosis from the GP and to get them to prescribe drugs to slow the development of the disease.
The GP should also arrange for the carer to go on a one day person centred care course.
We went on a Person Centred care course designed for social workers. It was the single most useful thing we did in the six months following my father’s diagnosis. It got us to understand the disease and realise for the person with dementia the ‘facts’ get blurry but their emotions remain. By understanding this it made it easier for us to look after him. Going on a course means this aspect of social care is learnt, understood and shared with others in a group. A booklet is an impersonal and lonely way of learning about dementia. It instructs but can’t share.
Having got the carer up to speed there is the need to conserve the social circle by quelling the fears of family and friends about dementia. ‘Prompts’ about the person with dementia can provoke memories and stories to keep people engaging and to help the person with dementia retain their sense of self.
Through my experience I created MindDIce (www.minddice.co.uk) a 12 sided dice with prompts to help family friends and carers to engage with my father.
Friendly Communities need this knowledge on a micro level; street neighbours, local shops, café, library, pub. Local knowledge and understanding of the situation could be the basis of maintaining people in their own home amongst what is familiar to them. Perhaps local councils could provide the person centred care course to neighbourhood/ residents association with a view to looking after a particular person with dementia.
Friendly communities also need to be supported by ensuring other institutions such as the Police, ambulance service, meter readers etc are up to speed and have an understanding of dementia’s symptoms and behaviour and are able to respond appropriately.
Perhaps Pub chains such as Wetherspoon’s or the like with large pubs and reasonably priced food could provide dementia friendly havens. It could lead to a wider understanding by ensuring people with dementia are in contact with the wider public who in turn can learn.
Finally do not to refer dementia as a wicked disease. This simply frightens people away when Dementians and carers really need them to engage.
I am a former carer who with my wife looked after my late father who had Alzheimer’s.
How can we create Dementia friendly Communities?
Learn about the disease and how to care for some one. Be bold and adventurous as far as possible, don’t hide away and help the person with dementia remain to a ‘player’ as long as possible.
First step is to get an early diagnosis from the GP and to get them to prescribe drugs to slow the development of the disease.
The GP should also arrange for the carer to go on a one day person centred care course.
We went on a Person Centred care course designed for social workers. It was the single most useful thing we did in the six months following my father’s diagnosis. It got us to understand the disease and realise for the person with dementia the ‘facts’ get blurry but their emotions remain. By understanding this it made it easier for us to look after him. Going on a course means this aspect of social care is learnt, understood and shared with others in a group. A booklet is an impersonal and lonely way of learning about dementia. It instructs but can’t share.
Having got the carer up to speed there is the need to conserve the social circle by quelling the fears of family and friends about dementia. ‘Prompts’ about the person with dementia can provoke memories and stories to keep people engaging and to help the person with dementia retain their sense of self.
Through my experience I created MindDIce a 12 sided dice with prompts to help family friends and carers to engage with my father.
Friendly Communities need this knowledge on a micro level; street neighbours, local shops, café, library, pub. Local knowledge and understanding of the situation could be the basis of maintaining people in their own home amongst what is familiar to them. Perhaps local councils could provide the person centred care course to neighbourhood/ residents association with a view to looking after a particular person with dementia.
Friendly communities also need to be supported by ensuring other institutions such as the Police, ambulance service, meter readers etc are up to speed and have an understanding of dementia’s symptoms and behaviour and are able to respond appropriately.
Perhaps Pub chains such as Wetherspoon’s or the like with large pubs and reasonably priced food could provide dementia friendly havens. It could lead to a wider understanding by ensuring people with dementia are in contact with the wider public who in turn can learn.
Finally do not to refer dementia as a wicked disease. This simply frightens people away when Dementians and carers really need them to engage.
my step father has dementia, and only recently gone into full time care after my mum had tried to keep him at home for as long as possible,and couldnt cope anymore. As she doesnt drive and i am the nearest relative it was and is an extremly stressful and emotional time,not only are we dealing with jim having this heartbreaking illness but the logistics of hospital and doctor appointments for my mom were unbeliveable, finding someone to sit with jim, while i took her to the places she needed to go, also the issue of trying to get help..ie: social workers, respite care,fincial and physical assessments are a nightmare, jim has been in full time care now for 7wks, and still is considered a temporary contract for respite care!!!because of assessments meetings, etc, and finding out how much she has to pay is also a nightmare, noone knows what each person or department is doing, and im constantly given conflicting information, and i am no further nearer now to what my mom has to pay than i was 3mths ago!!!!. This time is an exceptionally upsetting time for all concerned without dealing with all the paper work, spending time phoneing people, again and again because nonone keeps you informed, details are wrong so you have to phone again, this all needs overhauling to benefit the relatives, perhaps dealing with one person who will help with all things, not one for daycare, one for respite and one for full time care, and the finacial minefield!!!!!If anyone was on thier own with no help, god knows how they deal with it!!
Dear All, I have only come across this forum for constructive comment today as it closes. I am not a professional in any sense, however for the past year my family have been learning what it means to have someone close affected by Dementia/Alzheimers. In March 2011 My Mother suffered an unidentified illness/chest infection which really knocked her out for weeks. She was naturally forgetful at times before this, but now, at the age of 67, only 14 Months later it is not uncommon at all to be confused which day it is, which appointment to chose in a diary regardless of actual day, only half cooking food, turning up at friends or Church groups every day as if expected, expecting to go somewhere….then iching to get home, any opportunity for tea, cake or chocolate, multiple trips to shops with interesting results, Police trying to find her…and no recollection of where shes been…my Mums happy nature and then her anxiety and delusions if she sees an Ambulance say. My Dad realizing retirement won’t be what he expected, and… struggling to summon ways to cope when reasoning seems to fail. Its a learning curve to say the least. Like so many things in life, we remain ignorant till we are faced with a situation personally. The illness itself has far outpaced any of the processes of diagnosis and still to be counseled in coping/managing stratagies. Friends have shared their experiences – how to make sure you get heard rather than sidelined. I’m thankful good natured friends look out for Mum, I’m thankful for the time, resources and professionalism of the Police in searching the other Month. I was concerned that had it not have been for the Police officers insistance and presence it would not have been possible to access Ashford International Stations CCTV till Monday morning…..which was crucial to narrowing down where she was before it got dark. We were shocked yet thankful a member of the public called the Police reporting someone wandering confused along the A20 in Folkestone – v big thankyou whoever you are. We all know and appreciate it takes time for government plans to filter through to something tangible and meaningful. What can I say…but bless you all who care and who sincerely try your best with the limited resources available today. Don’t be too proud to ask for help if you are a carer in need if a break. Public awareness of how the condition can present itself will go a long way to enabling the population to recognise and respond appropriately if they find an individual or carer in need – they are all your family. Love to All. Peter:)
I agree with Natalie, awareness for all in the community is the way forward. I have observed when shopping in my local store how confusing it is for someone with dementia to try and choose one shampoo out of maybe 20 or so on sale, just one product. Also feedback from my client group is that this has stopped them from going shopping, the experience is overwhelming and they withdraw from the community. Maybe thinking outside the box and creating one section in the stores where someone can go and pick up the basics, inclusive to all.