Work of the dementia friendly communities champion group

The dementia friendly communities champion group is responsible for supporting the delivery of dementia friendly communities that understand how to help.

As part of this, the group will oversee a major event in summer 2012, which brings together UK leaders from industry, academia and the public sector to take forward the Prime Minister’s challenge on dementia.

The champion group will report on progress to the Prime Minister this Autumn, outlining the necessary actions required to deliver this strand of the challenge. The champion group will address:

  • the requirements to ensure that by 2015 up to 20 cities, towns and villages will have signed up to become more dementia friendly
  • how organisations can play their part in creating a more dementia friendly society and raising awareness of dementia
  • how best to develop a cross-sector approach to awareness raising and increase public understanding, and as part of this, input into the development of a nationwide awareness raising campaign, led by the Department of Health and the Alzheimer’s Society, to be sustained to 2015

The Alzheimer’s Society has organised 3 roundtable discussions relating to the group’s areas of focus. This will give other interested organisations and bodies, outside the champion group, the opportunity to discuss the development of dementia friendly communities. Papers from these meetings will be used to provide additional briefing for the champion group.

The group is also seeking people’s views online about how best to create dementia friendly communities. Have your say.

 

 

In Dementia friendly communities

18 Responses to Work of the dementia friendly communities champion group

  1. Lynne Fraser says:

    My father was diagnosed with vascular dementia some 3 years ago and it has progressed to the stage where he is now in a wonderful care home. When he was obviously getting worse a friend suggested joining her in attending a course of 6 weeks which was run by the Alzheimers Society. We duly went along and it was the biggest learning curve I have had for some time. Alan, the gentleman who ‘taught’ us was a wonderful, compassionate and caring man and answered all of our questions very patiently. My father was taken too hospital during this time and was there for nearly 4 weeks, whilst he was there it occurred to me that even some healthcare professionals have no idea how to handle people with dementia. All professionals should be asked to complete a course of this subject. I have learned that it is pointless asking someone with dementia a question because it just confuses them more and they can get very upset. I try very hard not to ask my father any questions, I just make statements, wjen I arrive I tell him what the weather is like outside rather than ask how he is. I don’t ask him if he wants a drink I just tell him I am having one and I will bring him one too. He likes to talk about his work and I just let him get on with it and say what I think is the right thing in the right space and he is happy in himself with that. People in general are frightened of anyone who is not the ‘norm’ and I think that they should be educated noto to be. I hope that in some small way I can do my bit for those with dementia by trying to educate the people I meet along the way.

    • Marcia Green says:

      I agree that all health and social care workers should have basic dementia awareness training and not just those working with adults. The more people educated about dementia the more understanding will spread.The NHS as a whole, GP surgeries, social care providers and large shops, department and grocery stores could start by carrying out basic awareness for their staff. This would be a great start for raising awareness of dementia and addressing the fears of the general public.

      In terms of communication with people with dementia, builiding a relationship with the person, taking time to get to know them and working with them and engaging in appropriate activities and conversation can bring some very rewarding exchanges. There are communication materials that can help to engage someone with dementia and allow the person with dementia to take an active part in making decissions about thier life.

      In an ideal world we would have well trained workers of health and social care working with people with dementia and the resources available for all to access.

      • Margaret Paterson says:

        Hi Marcia just read your mail and have to agree totally with your comments
        I have been looking after my mum for 4 yrs now she also has vascular Dimentia
        The problems are the same as you mentioned when she is admitted to hospital the staff seem to know so little of this illness and have no patience it seems comes wth lack of understanding .
        How can they possibly answer questions put to them ,we have to make the decisions for them ..nurses have commented to me oh your mother says she,s not hungry !!! so they dont feed her
        My Mother is now on the latter stages and i am sooo upset i have no help whatsover and trying to manage alone with only personal care as help .
        i also feel that there should be some help for carers when parents are at the latter stages of the disease as i am trying not to put her in a home so she can be comfortable with me there .
        Sadly this is a massive insight to all our futures for me it is scary!!

  2. Jane Brann says:

    Dementia – what a horrible word that is. What we learn as children and the cruel words used in our teenage and adult life makes us very uncomfortable with people with dementia. “Not all there” being one of the least offensive. Sub-consciously we are very wary of people with dementia, we are afraid that they will do something sudden, embarrassing or perhaps even violent.
    I read a tweet yesterday sent by a mother whose young daughter was talking about her grandmother. She said it was part of what her grandma was, and she was still great at giving cuddles, so what’s the problem.
    It made me think….My Nanna had dementia, but we didn’t even think about it in those terms. She used to get lost at our local shops regularly, we just used to go and fetch her when one of the shopkeepers rang us. She used to leave the gas cooker on, so we as a family used to make sure it was turned off. She lived with us, so she was looked after.
    Like Lynne Fraser says – I will tell people about my Nanna, and try to “normalise” this ghastly disease in some way.

    Let’s send more stories about people we love who have had Dementia and tell people they are not frightening, they are still normal people, who have had the horrible misfortune to get dementia.

  3. Irene Woods says:

    My Mum has Vascular Dementia and Alzheimers The past two times my mum has been in hospital for various illnesses i ask the nursing staff if they now what Dementia is and if they can take care of someone with it i was told yes on the first visit so ok thats fine says me next morning i was told mum could get home after an overnight stay i asked the nurse what my mum had for nurse what mum had for breakfast and lunch i was told nothing she didnt want anything . well i hit the roof i asked what part of DIABETIC and DEMENTIA did they not understand mum has to eat and that she should have been given something the nurse just said sorry and walked away . the next time mum was in hospital i asked again and i was reasured by a lovely nurse and yes she did no so when mum was put into a ward and after a week of being in bed a nurse asked her if she needed help to go to the toilet mum being mum no im fine and the lovely lady in the next bed said sorry margaret needs help well this lady was told to mind her own buisness and they left my mum to get on with going to the toilet herself . well when i was told i got very angery and thanked the lady for her help and kindness . i spoke to a staff nurse and i told her what had gone on and that i was not happy and again what part of dementia and alzheimers did they not understand nothing happend no appoligee or nothing and one night a nurse told mum when i was sitting to drink 2 jugs of water a day i said they needed a jug of water as the one she had was empty and to keep filling her glass up and mum would not remember to drink if the glass was empty and to prompt her as well . I think all wards in hospitals should have at least one nurse whom knows something about dementia .

    I also hope this National Citizen Service young volunteers to help people with dementia by giving their time in care homes around the UK. and any discussion David Cameron makes will include SCOTLAND

  4. Carol Munt says:

    It is unacceptable that in 2012 there is no mandatory training for health care workers.
    Anyone dealing with vulnerable adults should be trained in elderly care and dementia.
    We advocate a 12 month training which would give a recognised qualification in elderly care and which would count as year 1 of the Nursing degree for those who wish to follow that path.
    A qualification would give confidence to both the people achieving it and those who benefit from their care
    All care workers should have to take a minimum mandatory training before being ‘let loose’ on those of all age groups needing care.

  5. Malcolm Bray says:

    Dementia Friendly Crawley

    In Crawley we have established a Dementia Alliance which is committed to creating a Dementia Friendly Crawley

    Dementia Friendly Crawley – our vision

    Crawley a town where the people living with dementia and their families are able to live well and are supported across the town to get the help they need to ensure every day life and pursuit of leisure and cultural activities are made easy

    Our ambition is to:

    • Develop the Crawley Dementia Alliance to ensure a broad network of support including town centre and neighbourhood businesses, transport providers, voluntary and community organizations, health, local government and the police
    • Raise awareness of dementia and significantly improve customer experience and community support
    • Improve the health and wellbeing of people living with dementia and their families
    • People living with dementia and their families are supported to describe a dementia friendly Crawley and are empowered and supported to provide practical solutions
    • Support people to remain independent for longer and to reduce social isolation

  6. Sheren says:

    The plan appears quite comprehensive. To carry out the plan and based on the size of the state and sad but true inequities in available services, a team of coordinators may be required as opposed to one person or satellite coordinators simply to gather all the necessary information to move forward. The current tool used for assesment for facility placement is inadequate and does not allow for a true reflection of needs or remaining areas of strength which are equally important. The people I see starting to get lost more in the service cracks are those with the dementias such as Pick’s and Lewy Body that people are basically scared of because they are only aware of negative aspects and have little to no postive behavior support available either through training or from the community. These are also the persons most difficult to try to support in the home. Thank you to all who worked obviously very long and hard on this plan.

  7. Norman Mc Namara says:

    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

  8. Mandy Davis says:

    I work within the local mental health Trust and my grandfather has advanced dementia. I think a lot of the work needs to be around supporting the carers and family, as this always seems to be missed. My grandmother was caring for her husband even though she was dying from cancer and the NHS nor the social services gave her any support. In fact I contacted the Alzheimers society who came to see her. When she became too ill my grandad was treated as a diagnosis, not an individual so was doped up with medication so he couldn’t understand what was going on. Education around the fact that people who have Dementia still are human beings, are physically active and need respect. Dementia is very much stigmatised in society and this needs to go as many of us will have this condition in later life (some not even in later life)

    • Rosemary Rowberry says:

      My husband was diagnosed at 59. After caring for nearly 8 years, I had to place him in a nursing home. Help is available for early stages, but later, if they become challenging, there is nothing in the way of support. I’ve found a good care home but am struggling to “help” them understand his needs. He needs time more than anything, and whilst they’re all kind, they find the easiest thing is to leave him in his room listening to music, where he’s becoming more and more depressed. The comment about individuality, is so important. Even though he struggles to communicate, he has individual needs and until these are met he won’t settle and be happy.

  9. Jane Moore says:

    Today, Camelford in North Cornwall began signing up to their Dementia Action Alliance. Everyone seems very happy to join in and do whatever they can to discover ways in which their businesses can become dementia aware. Following the lead of Norman Mac Namara (above) badges will shortly be given out to all who have read “What is Dementia” and the town will come together as the dementia friendly community that it is.

  10. jean phillips says:

    my mother started to have dementia 2006. By 2007 she wouldn,t get out of bed only on a few occations.I looked after her plus had home care to help me out.One evening in December 2008 she started to wander.It was suggested that she should go into restbite to sort her drugs out.Within two days she became aggitated so i took her home ..,But the days that followed she was becoming distressed so took her back. Within the following days she had fallen and cut her head. I was told by the carers she was dancing? didn,t believe in what they said.She was then taken into a hospital for dementia.within three weeks she had become constipated.her stomach was so distended I constanly asked why. was told she had constipation with overflow . this continued for three weeks. was told by a patient that she was not eating her food.discused this with the staff and doctor.nothing was done but was keeping an eye on things.I had a phone call to say that she was not well. I took her into hospital. the next day my mother died of peritonitis her bowel had burst.i haven,t got any faith with the care of dementia. I wish that I HAD KEPT HER HOME. i FEEL GUILTY FOR HER DEATH.I miss her so much

  11. Jamie Robinson says:

    My mother (78) is on the cusp of the later stages of Altzheimers. My father who is 83 is her main carer. Due circumstances in my health for the last 4 years I have been the go between for the Social Workers,Doctors,Carers and have kind of held my dad’s hand through the tough times. I even attended a number of courses for main carers to pass the knowledge I picked up on to Dad.

    He kind of put his head in the sand over the early years when Mum was first diagnosed.

    I propose for more Daycare Centres (including respite care if needed) that run 7 days a week and run from 8am til 5pm. Mum attends daycare from Monday to Friday which provides her with stimulation and gives Dad a well deserved break. I take Mum out whenever I can, and help dad with cleaning and listen to him when he needs someone to talk too.

    Communities need someone who can help carers with Dementia make sense of it all and what help is available. Sometimes they are too proud to ask (especially the older generation) or perhaps to scared to face the consequences of what their loved ones are facing.

  12. Tracey & Sagal says:

    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.

  13. John Sprange says:

    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.

  14. Wendy Smith says:

    I took care of my mother for 6 months from the time my father died until she too passed away. Thanks to my very understanding local council we were able to move her into sheltered accommodation close to where we live, with a health centre just across the road. Although I was not registered there, the doctors took good care of both of us & were happy to see me to discuss my mothers care without her being present. This was a great help especially with paperwork. On one occasion I received a call from the local post office a few hundred yards from her flat. Mum had gone in & was confused & distressed. Thankfully they found my number in her handbag. When I got down there she was sitting behind the counter with a cup of tea. There was no formal Alzheimer’s community in the area, however in practice there was. Social services were a different matter, getting help for her was difficult despite being a high priority due to my own ill health.

  15. It seems today that despite an overwhelming increase in demand for dementia services and the ability to make some very real improvements in the quality of life of those with dementia and their families, at a practical level those confronting the illness have been abandoned. We’re concerned that there is a gap between the government’s intention to address the problem and the reality of what is happening on the ground, which has left many unsupported.

    If change is going to take place, it is imperative that GP’s, social workers and other health care professionals who support those with dementia start to understand the importance of actively directing people to dementia specialists.

    As a provider of high quality dementia care, at SweetTree we know that there are also many things that informal carers can do to improve the lives and experiences of loved ones with dementia – if they only knew about them. Often making a huge difference in someone’s life is not about spending money but gaining knowledge. Improving communication, nutrition and creating a more active, stimulating life for someone with dementia generally costs nothing, but can have an enormous impact on how they cope with their dementia and the world around them.

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