How could health and care for people with dementia and their carers be improved?

older couple discussing careWe asked for your views on improving health and care for people with dementia. When responding, we asked you to please consider the health and care areas for action.

  • Are these the right areas for action?
  • Is anything missing from the areas for action?
  • Do you have any evidence or good practice relating to dementia health and care services you could share with us?
  • What can you or your organisation do to help deliver the actions?

Your comments will help inform the work of the health and care champion group.

Comments closed on 31 July 2012, but you can still read what people have said below.

In Get involved, Health and care

67 Responses to How could health and care for people with dementia and their carers be improved?

  1. The Hon. William Beckett says:

    I have two comments to make. Firstly, the cost to the NHS of hip repair operations after a person – often with dementia – has fallen is over £2bn a year and rising. The cost of a pair of hip protectors is less than £10 a year. Surely it would make sense to issue those with dementia with a pair of hip protectors? It could be done through the prescription system.

    Secondly, why is there no discussion of Prof. Heinz Wolff’s idea of a work bank that would allow younger people to earn credits for their own old age by providing services to the elderly. This is the only way that an increasingly aged population can or will be cared for in the future.

    • PeterJones says:

      Hip protectors are a good rescours depending on the level of co-operation of the client. Within the illness the distress physical and emotional of wearing them can lead to non compliance

    • Juliet Smith says:

      Firstly you should NOT define the person by DEMENTIA alone, they are still individuals and should be treated as such with no bias. If an operation is more suitable to them personally and individually, then they should have access. Also, you should ask youself how you would like to be treated, would you be comfortable wearing hip protectors?

      I am not sure that drafting young people to look after the elderly would necessarily work as it could potentially generate resentment and lead to abuse. Trained carers can struggle with their role, so young immature people would probably struggle even more.

    • Marie O'Brien says:

      William Beckett are you implying that a person with dementia has less value than a person with full mental capacity ?
      are you being discrinatory to this group of people ?
      I think you may need to have some training in Dementia ,as you clearly do not have any idea about it .Shame on you

  2. Stuart Brown says:

    Singing is a great way to trigger memory and can be provided in almost any community which has access to a Village Hall or Community Centre. Using modern music technology it is no longer necessary to have a professional musician to lead the sessions and volunteers can be recruited locally. Sessions could also be held in residential care homes which has the added advantage of integrating the home with the community. A Carer writes:

    “As part of our daily activity programme our daily singing sessions help our residents to live well with their dementia and they are left with a good feeling …it’s great to see our residents starting to sing and remembering the songs. I have loads of fun with them… its like electricity: the room comes alive – they start off sleepy and finish up alert , awake and engaged.”

    If the residents are happier, the carers are happier.

    • Heather Pearson says:

      Stuart, I am the daughter to Mum in year 13 of Early Onset Alzheimer’s Disease, who has made great personal progress since taking up singing in a group setting, it has been invaluable for stimulating her brain and making her happy too. The subjects of ‘Singing’ and ‘Dancing’ have been two of the key ‘themes’ running through my Facebook Dementia News Service for friends:i.e. ‘You Choose News’ – Supporting the Alzheimer’s Society’, for nearly 18 months now. It would be great if you could join our friends group, now over 4,000 strong (Heather Pearson, Norm Mac and ‘Dementia Aware Group’ pages combined). Please come and join us! All best, Heather Pearson https://www.facebook.com/heatherppp

    • Jane Moore says:

      I totally agree that singing is a wonderful thing and perhaps the most important of activities to the Dementia sufferer. I sing voluntarily but I do think Carehomes should be holding singing events every week. This is down to the owners providing a little extra for entertainment.

    • Steve Rowland-Jones says:

      Dear Stuart,

      Music in Hospitals is a charity provides live music right across the healthcare spectrum including care homes and specialist dementia units, something we have been doing since 1948. It is our experience that using professional musicians is quite important for a variety of reasons. The most important thing though is the ability of the performer(s) to engage with the audience, whatever that audience might be. Whilst there is some benefit to be had in “background music”, the real benefit comes from the interaction and engagement with the audience and then the reaction can be quite incredible. Indeed, recently a carer described one particular outcome as a little piece of magic.

      There are some settings and audiences where a particular genre of music just isn’t bringing about the right level of engagement and therefore the musician(s) need to have a repertoire of sufficient range to be able to change and thereby bring about the engagement that is so beneficial. With all the will in the world it is unlikely that anything less than someone performing music (in whatever form) on a regular basis will have the range or confidence. Playing from sheet music detracts from the interaction.

      Overall we manage to put on nearly 5,000 concerts right across the UK in all areas of healthcare from special needs schools on the one hand, through hospitals, homes and hospices, to specialist dementia units on the other.

    • Helen Green says:

      As the dementia challenge increases more preventive opportunities should be looked at before we are overwhelmed by numbers and more younger people develop dementia. Instead of the existing style of nursing homes more communities could be developed which allow a partner to live with the person with dementia. While they still have enough cognitive facilities using other types of “treatment” may help. Reminiscence therapy, music therapy, occupational therapy and physiotherapy all hava a role to play. They can help to bring back memories, find photos, allow the relative to be involved. There are so many options that can be used. Include other family members if present. Set up the home to ensure it is as safe as possible, hide the keys at night. If they wander at nighttime this can cause a disaster, depending where ther live. Tracking devices can help to find the person with dementia as soon as possible. Anger and irritability can cause enormous problems especially if the carer is struggling to cope.

  3. Shirley Hackett says:

    Can anyone please tell me where the dementia care is in Sandwell? There are waiting lists for any care centres. If you have a problem where do you go because no one seems to be bothered in returning calls? For the last three years dementia has been on going in Sandwell – whats happened because I have seen no improvement – you just have to get on with it. It annoys me that you hear of all the money going into dementia – where is it going?

  4. Wendy Brewin says:

    The project I am involved with, Creative Spaces, has been helping residents with dementia, living in a care home, to have greater access to their outdoor environment and improving that environment to provide greater stimulation for them, their relatives and staff. Through this and the addition of creative outdoor-related activities, people sleep better, are less anxious and depressed and communicate more with staff who discover more about the person behind the dementia and are happier in their work. Why are outdoor environments in care homes not used more in dementia care? They also help to re-connect people with dementia with their local community, but more of that in the dementia-friendly communities section…

    • Kay says:

      Glad your type of project exists. It is bizarre to me how easy it seems to be to forget what people need and enjoy. For those with dementia, care workers and families have a key role in ensuring what the person has forgotten is remembered through regular actions. Makes time more enjoyable for all concerned.

      • Wendy Brewin says:

        Thanks Kay, you’re right; everyone benefits from days filled with meaningful, enjoyable interests. It doesn’t remove the need for medication but it definitely eases the amount required and helps reduce costs. I find it difficult to understand why it is taking so long for the arts and outdoor environments to be taken seriously as beneficial and vital elements in dementia care. My experience is that they are still perceived as ‘add-ons’. When did spending time outside become a luxury?

  5. Emma says:

    George’s Story – “Debra and i met at a dance club, Court School of Dancing. She was a good dancer and she was good company. When she was annoyed, i used to know she was annoyed but we never ever went to sleep without kissing each other goodnight. We had 38 wonderful years, Unfortunately some 4 or 5 years ago; she developed Dementia and went down hill from then on. She didn’t know where she was, she didn’t know we’d been married, she didn’t know who i was sometimes. All i could do was, put my arms around her and assure her I’d be there for her. When she lost herself or refused to accept me as her husband, i just didn’t know what to do. I became very depressed and was obviously approaching a breakdown because i use to get sudden bouts of sobbing and crying. Once you’ve made that decision that your partners got to go into care, you obviously feel lost. Your use to going to bed and cuddling up to someone, and suddenly you’ve got a whole double bed to yourself.
    Unfortunately, i can’t say goodbye to her because if i try and say goodbye, she asks “are we leaving now?” and of course that’s something i can’t do so i have to pretend i’m going to the toilet or something of that sort and just walk away from her. And that really is difficult, really difficult.
    This Charity Sing for Your Life, sets up Silver Song groups. Silver Song’s comes in and organizes people singing. So i thought it would be an ideal opportunity for the pair of us to do something together. Music certainly is a great comfort to people with Dementia, It brings back memories of what they’ve forgotten. Then suddenly they’ll recognize something and awake to it, for that period they’re back in normality, it looks like a miracle when they apparently are asleep, it brings them back to life, even if only for a short period.”

    • Wendy Brewin says:

      Lovely story Emma, and so common when we’re talking about dementia and creative activities; particularly George’s comment about bringing them back to life, even if only for a short period. Anything creative, whether that’s music, dance or another form of creativity can lead to stimulating and meaningful moments. It may not be that a person with dementia carries those moments beyond that point in time but they will carry the impact longer. A person who has engaged in a day of meaningful moments may not remember why they feel more relaxed, happier and less depressed and isolated at the end of the day…but they will. And that’s what counts.

  6. Christine Michael says:

    In reply to Shirley Hackett, it must be very frustrating if there seem to be no local services available to help. Having at the very least a well-publicised point of contact in every health and social care setting, specifically for people to turn to for information on dementia, might help, especially when they are first struggling to get support or wondering where to find reliable information and advice.

    • Virginia Cleeves says:

      And any government funded support/advice should be available regardless of whether someone will be self funding or not. We’ve found that we’re on our own because we will have to pay for any help we need so have ended up going for the accessible care (which happens to be putting Mum in a care home) rather than knowing what other options might be available to keep her at home.

    • Jackie Taylor says:

      Agree wholeheartedly, although there ought to be a single point of contact, as it seems that GP’s start things off hand over to consultant but still give new medications etc as requested by the patient, noone seems to actually co-ordinate things in the early days of diagnosis. Family memebers get told conflicting stories and never really know what is happening.

  7. Gill Phillips says:

    I am currently hosting a daily series of “in my shoes” guest blogs, looking at dementia from different perspectives. It is turning into a fascinating series, with contributions from carers, care providers, researchers, a variety of front-line staff and other professionals etc: http://www.whoseshoes.wordpress.com

    The stories are powerful – not only from carers but from dedicated professionals. Some key messages are coming through but, in a nutshell, it is a case of thinking how you would like to be treated yourself: compassion in care; empathy – understanding what it is like to walk in the shoes of the person with dementia and the carer; information and practical support; joined up services and thinking; imaginative approaches to communication to find out what is important to the person; meaningful activities; valuing the person rather than seeing them as a “condition”; recognising people’s unique qualities; using perhaps art, music or picture books to stay connected or re-establish connections; the power of reminiscence and life stories; fully involving the family and informal support circles.

    Everyone working together in a person-centred way.

  8. Anna Watkinson-Powell says:

    Although I appreciate the efforts to improve care in the community, some patients with dementia will need periods of time in inpatient units, either because of physical health problems or severe behavioural disturbance. Walton Hospital in Sheffield has two new purpose-built wards for such patients and was specifically designed for dementia patients, from the ‘figure-of-eight’ layout to the colour scheme. There is access to sensory therapies, which provide an alternative to antipsychotics and there are regular stimulating activities, tailored to the needs of residents. I am very concerned that such excellent facilities face an uncertain future as they start having to bid for contracts and funding for such services needs to be increased. The needs of such patients often cannot be met in the community.

    The principals used (of making patients central to the design of the inpatient environment) should be applied more widely to geriatric wards, intermediate care and long-term residential homes.

    Staff training is also essential as many nurses and healthcare assistants who care for patients with dementia have no specific training, particularly in how to manage challenging behaviour and how to monitor patients for pain and other signs of distress.

  9. Jackie Kindell says:

    My comment relates to those who have a more atypical dementia, and in particular those with progressive communication conditions such as primary progressive aphasia and semantic dementia. Diagnosis, understanding and services for those with such conditions vary considerably across the country. In some areas there is excellent support, whilst in others areas individuals are misdiagnosed, diagnosed too late or when a diagnosis is given they are given inaccurate information and discharged with nothing more than a leaflet about the condition. The focus on ‘Memory Clinics’ means that in some areas those that do not have a typical ‘memory’ presentation of their dementia do not get referred to such services. The progressive nature of their problems however mean other services may exclude them and they are left with no support. I am aware there is a great deal of excellent work in both health and social care to support people with such conditions and their families and this includes diagnostic work as well as creative support from health and social care from a variety of disciplines. However, this work needs to be replicated in other areas. I hope the Frontotemporal Dementia Support Group, and other specialist services will be consulted about improving services for this group.

    • Margaret Metcalfe says:

      I agree that appropriate services for people with PPA and semantic dementia need to be consistently available and have appropriate expectations. The prognosis and management of people with these diagnoses are quite different from Alzheimer’s Disease or other more frequently occurring dementias. I was recently involved with a woman who had been diagnosed with Alzheimer’s Disease and became anxious and depressed because of what she thought the future would hold. With appropriate information, advice, support and the implementation of effective strategies she was able to return to leisure activities and continues to function well in her home and community. I hope that speech and language therapists, who have expertise in managing communication disorders and can make a significant difference for people with these diagnoses, are involved in making the diagnosis, information and care that is offered consistently good.

  10. Julia says:

    In my work I meet many people with dementia who live in care homes and, while some care homes and many individuals do their best to provide sympathetic care, for many residents I think the experience is sadly one of isolation, anxiety and boredom.
    Much more effort needs to go into providing a more enlightened approach which offers security and friendship as well as physical care. I wonder if we have become too concerned with measuring and reporting care tasks (which are easily measured) rather than well-being which cannot readily be ‘measured’. In some instances, is the care offered aimed more at passing inspections than creating a homely atmosphere?

    • PeterJones says:

      Julia as a dementia care home manager how right your comments are.
      for many uears our paper work and tasks have been to comply with regulators and commissioning teams. We do however have an
      assesment tool based on dementia mapping a short version that gives an
      indicator to emotional well being its not perfect but we are trying

    • Jane Moore says:

      There needs to be more staff on hand so that carers can give the individual attention to residents – more time to answer their questions; more time to sit quietly with those who have no-one else; more time to care, basically. That’s what all carers really want but form filling low wages and lack of staff is creating a situation I call “nightmare” allowing people to be sat in a chair feeling lost , crying and bored. I hope things change when my turn comes around – I for one am not going to sit back and take it.

  11. Sarah Kramer says:

    Having worked with people with a dementia for over ten years, I have seen many of those diagnosed enjoying a quality life with their families for years post diagnosis, where families are offered appropriate support. With many people, they speak of their ‘lives changing’ when offered an explanation of how their family member can be supported to communicate and to understand people around them, requiring no more than an average of three sessions. However, this specialist support is only available on an ad hoc basis, rather than as a consistent part of dementia support services. General advice often does not address individual families’ concerns and may even be inappropriate, especially where there is an atypical presentation or even a dementia other than Alzheimers. Specialist advice around communication should be widely available immediately post diagnosis. It would decrease the costs of caring for someone with a dementia, and result in less frustration for those with a dementia and their families.

    • Joann Waudby says:

      Sarah, you are so right. We looked after my mum at home, she had Alzheimers for 13 years, and we still took her away to our apartment abroad as much as possible, even though it wasn’t easy at times when she wanted to get off the plane mid flight!…but she loved walking about in the sun, listening to the singers in the Irish Bar (she was Irish), and being with us feeling safe. She managed to go away right up to the year before she died. The last 12 months were hard, she fell and broke her hip, and went into hospital, she was in there for about 2 months, we fought hard to get her back home with us as they were not looking after her in the hospital and we could see her giving up before I very eyes. They kept trying to convince us to put her in a home, but my Dad stood his ground and said No she was coming home with us where we could look after her on a one to one, we had to sit in a room with 10 other people and ‘prove’ we could look after her!!! to the very hospital staff who hadn’t given her a drink or bite to eat for hours on end, made my blood boil! Anyway, we got her home, and managed to organise carers to come in and help (who were fab) and kept her at home with us until we lost her in June 2008. You can give that person a better quality of life, but you need support of carers, and a good family/friends network to do it, as it is very hard, but the satisfaction of seeing my mum smile everyday when she saw me, or my dad, and her blow kisses to me will stick in my mind forever, no regrets at all.

  12. Jill Walton says:

    Acheiving a correct diagnosis is the first hurdle that many people with the rarer forms of dementia have to acheive. Often misdiagnosed or not recognised as significant, the symptoms of these dementias have the potential to cause great dstress to both patients and carers. Delays in diagnosisng frontotemporal dementia can have devastating effects upon marital and family relationships, as well as business and financial implications, quite apart from the enourmous health costs that a diagnosis holds.
    Posterior Cortical Atrophy may be mis diagnosed for years as a problem concerning eyesight per se, as opposed to being recognised for the variant of Alzheimer’s disease that it is.

    In my role as a support group coordinator and nurse adviser, I believe that whilst all areas of care for people with dementia need addressing, until we can rely on healthcare ptofessionals to acheive timely and accurate diagnoses the gateway to good quality care cannot even be opened.

  13. Emma says:

    Sing For Your Life – Singing in Residential Care Homes.

    A few months ago, I expressed an interest in finding out more about “Sing for your life”. I met with Adrian Bawtree, listened to and read about the aims of the Organisation and was taken to visit Clifden House which is a Dementia Care Home in Seaford, East Sussex. There we discussed starting a Silver Singers Group and a date was fixed for our first session. Three other local singers had already volunteered to help me lead the singing and the Home’s Events Organiser offered to operate the Silver Song Music Box which for me was a great bonus.

    I arrived at the Home a week later for my first session and I was extremely nervous. I looked around the lounge where most of the Residents appeared to be asleep and wondered whether I could actually walk in there and confidently start to sing. I plucked up courage and strumming my guitar started to sing “Daisy, Daisy”. As I walked from one end of the lounge to the other I started to get a response. For the next hour we sang a wide variety of songs and I was aware that most of the residents knew far more of the words than I did! We handed out percussion instruments for them to play and encourage them to move or dance to the music.

    The hour passed very quickly and at 3pm it was time for afternoon tea to be served. What a difference the singing session had made! Now the residents were sitting forward in their chairs, talking and interacting with each other. There was a happy buzz in the lounge, quite different to how it had been when I nervously entered it one hour before.

    I have now led two more sessions and many more are planned. I am very grateful for all the help I get as I could not do it alone.

    Margaret Hopkins
    27 June 2012

  14. Maggie Drury says:

    From a speech and language therapist’s viewpoint, better care in all settings is crucial and ideally within residential settings, would include mandatory training on how to communicate effectively with people with dementia to ensure that the environment maximises their skills. Also, training is needed in how to identify potential swallowing difficulties that can lead to aspiration pneumonia. This occurs on an ad hoc basis currently in our area, but in a lot of settings isn’t given priority or even considered. Appropriate communication advice can support carers/families and lead to a reduction in frustration for both them and the person with dementia and help to reduce the amount of medication required. There are also ways that the person with dementia can be facilitated to express their needs at the right time and make decisions about their future health care and end of life wishes even if verbal communication is limited.

  15. Debbie Carroll says:

    With a fellow garden designer we are beginning some Environmental behavioural study work to better understand the benefits of the outdoor space for those with dementia and to feed into support fellow designers asked in to design care home or other gardens accessed by those with dementia.

    There is so much evidence of the benefits on so many levels to access to outdoors such as Daylight in the morning reducing agression, the safe ability to have access to purposefully walking or get out reducing the stressful sides to wandering, improved physical ability reducing falls and improving sleep patterns, access to nature and nurturing of horticultural therapy to reawaken deeply held memories. Yet with all this evidence Prisoners have more rights in law to an hours excercise and fresh air a day than those with dementia in care.

    We are hoping to better understand the key elements that may benefit sufferers by accessing an outside space, both in care homes, hospitals or even at home, so access to the outdoors becomes part of the care package and not an added extra activity. I cannot imagine never getting to feel the outdoor elements on my face yet many do not get this built into their care where it should perhaps be seen as negligent to miss it out.

    Many of our longest term memories are associated to the British weather, nature and outdoors so to deny this stimulous is missing out on an often free or underused resource. Having now re-designed two dementia care gardens where either lack of knowledge by the designer or by care staff to actively incorporate the potential of the space into meaningful activities meant the end result lead to an under-used space.

    It would be great to see a move to integrate the use of the outdoors to reduce use of drugs, improve quality of life and enshrine a minimum access for any person to access the outdoors while still physically able either on foot or in a wheelchair daily.

  16. Kath Horner says:

    I am currently Lead for establishing a Dementia Friendly Community model for Sheffield in partnership with NHS Sheffield, Sheffield City Council and a range of voluntary and community organisations.

    I have been, and am continuing to, establish work in one area of the city. I have an end of pilot report which people are welcome to read if you contact me on kath.horner@nhs.net

    An example of the work to date includes ensuring people with dementia are linked into the City Council Travel Buddy scheme; ensuring people with dementia are welcome at gym’s in the city and looking to influence Sheffield International Venues with a view to rolling out this idea. Intergenerational work with one school. Seeking to develop Community Theatre with people who have dementia involved in writing the script.

    I would be pleased to make contact with other areas of the country who are working on developing dementia friendly communities.

  17. Eibhlin Inglesby says:

    It is crucial that carers of people with dementia receive staged and tailored support. This is very important at the point of diagnosis as the diagnosis affects everyone so acutely. Signposting to carers’ organisations at this point can give the sustained support that carers need in their essential role.
    People with dementia should be advised at early to accept support from others than their main carer so that at advanced stages the carer is able to access respite from the caring role. This can profitably be just a few hours a day but will make an enormous difference to the sustainability of the caring role and the integrity of the relationship which can become strained through tiredness and restriction.

  18. Susan Higgins says:

    After caring for a loved one living with dementia and seeing how a session in a sensory room helped to calm her, we developed a sensory relaxation tool, “A Sense of Calm,” that can be used at home, or in a resident’s own room at a care home, to help relieve the agitation, anxiety and rage that are prevalent in people living with dementia, especially those approaching the latter stages.

    Sensory rooms are expensive and the size of some of the equipment makes them too cumbersome for home use. Even in an institutional setting, like a care home, the sensory room tends to be used for specific therapy sessions, rather than when someone needs it most, in times of anguish and agitation, so we have developed a sensory tool in the convenient form of a DVD that offers the same benefits as a sensory room.

    The DVD is now being used by BUPA Care Homes, a number of other care home providers and Dementia Champions. It helps to calm people who are becoming agitated and to prepare people before they undertake known stressful activities, like washing and eating, or as a background to other therapies.

    We are convinced that the DVD would be a useful tool for family carers looking after people at home (we wish we’d had it earlier for our mum) and we are marketing the DVD through our website, http://www.asenseofcalm.com. We give a donation to charity for each DVD sold and we would like to help as many people as we can with this product, but our problem is how do we make busy family carers aware of the DVD and demonstrate how helpful it can be?

    Family carers have little time to themselves and can easily miss newspaper and magazine articles discussing new developments in dementia. Some carers are also at an age where surfing the net for answers is not an option. When we were caring for our mum, the local health authority helped with special bathroom equipment and chair risers, but there was little information on what we could do to quell her understandable agitation and confusion, which we now understand to be caused by sensory overload due to the confusion and frustration caused by her dementia. Sensory stimulation is very important to people living with dementia, but that stimulation needs to be appropriate for the individual, as someone can easily be overwhelmed with sensory overload. There will become a time, for example, when someone might become agitated and upset by not being able to follow the plot of what was once their favourite TV show.

    When someone living with dementia is in distress they need access to the right kind of sensory relaxation. We are currently developing a short, simple carer’s video guide, explaining how sensory overload can cause distress and how the right kind of sensory stimulation can help. From our experience, when, as a family, you are suddenly thrust into a situation where you are caring for a loved one with dementia, there is still very little information about what you can expect to happen next and what you can do to make life easier for them.

  19. Mike Lodge says:

    You may be interested in the work on dementia that the Adults Health and Social Care Scrutiny Panel at Calderdale Council has undertaken. You can find it here:
    http://www.cfps.org.uk/library?filter=dementia&filterfrom=issue_name&match_all=true

  20. Liz Knox says:

    Training! Awareness! Training! Awareness! a speaker/expert, someone like Norm Mac, at each session talking of all things that staff or anyone has or will come across with a dementia patient i.e the repetitive questions, the wanderings, pent up anger/fear etc THEN go through each scenario from the mind of a dementia patient, allow them to feel what its like looking ok from the outside but so trapped inside.

  21. julie wilkinson says:

    From a hospital setting point of view-

    Better collaboration between hospitals and community.
    Volunteers in hospital settings to sit with patients / provide some relief from the boredom of being in hospital/ activities.
    Better training in hospitals for staf.
    More staff available in areas of hospitals where there are high levels of patients with dementia who need time more than anything.
    Better design of hospital environment to make it more dementia friendly.

  22. julie wilkinson says:

    Also we have just employed a nurse practitioner in dementia care within the trust which is a great step forward.

  23. Jude Farnell says:

    It would help if people stopped talking about these issues and started DOING something about them, What is needed is recognition of the problem, early diagnosis and appropriate care. Often it’s not recognised that the major thing that most old people require is company so that they are not sitting alone with no brain activity – especially when their mobility is impaired. Unfortunately time is the most expensive commodity, so it’s going to be an uphill struggle to find a solution to he problem. Families should be encouraged/helped to support their own elderly relatives too – just because people are old, doesn’t mean they have nothing to contribute.

  24. Jenny Searle says:

    My mother has Alzheimers and I organised care for her at home until we had to sell the house, now she is in a care home and has good days and bad ones. I was heavily involved, I felt it my responsibility, so I read up a lot and watched her and listened to her to see what was going on with her, and chose people that had professional skills and empathy for her as a person. I stopped taking her to the MMS clinics. Lessons I have learned plus a few general ideas. 1. just because words disappear it doesn’t mean understanding does. Find other means of expression, art, music, drama, plants. Don’t be shy of using children’s toys and pretend play. I made the mistake of bringing too many things to the care home and it was too much stimulation.. 2. Carers need to adopt a strictly professional attitude to deeply personal care. It needs to be delivered with the utmost skill gained from the best training gleaned from worldwide best practice. 3. Carers in homes must be chosen for their ability to empathise, willingness to learn about people’s lives, have a basic understanding of history, and communicate in the right way. Care home team leaders must lead teams and there should always be a named person in charge of delivering care to each resident. 4. Care homes need to be architecturally and aesthetically designed to work as a home from home for small groups of people prone to fear and anxiety who need to walk or keep moving who may be in a different time and space much of the time. Yes to sensory areas, light and shade, stimulation and calm, walking or being pushed so their memories can hang on to something suggested rather than described.

  25. S says:

    A lot more needs to be done to provide higher standards of care in nursing homes.
    1) Activities: residents should not be left for long periods of time in their chairs/dining room etc and should be provided with plenty of stimulating things to do.
    2) Most importantly, interaction needs to occur on a much larger scale! The staff should be given a lot more time to sit and talk to residents, to simply hold their hands and to provide companionship. If the staff cannot do this other people should be brought in to provide this-even on a voluntary basis. Care homes should be working harder to get volunteers in to provide this companiship and oppertunitites to chat.
    3) Staff should be required to understand dementia better, more training should occur, no staff should be working with a dementia resident if they have not recieved training- they should fully understand the symptoms of dementia and respond appropriatly.

    Overall there is a drastic need to provide better levels of care for ALL elderly residents in any care home!!

    • J says:

      S – I absolutely agree about a higher standard of care. When looking for a care home for my mother I found only one that did not leave the residents sitting around the edge of a huge impersonal sitting room all day. I called it God’s waiting room as it seemed that they were just sitting there waiting to die. Care homes should be better regulated with minimum standards of care when it comes to activities and mental stimulation. Ideally all care homes should be not for profit so that the residents are put before profit. My experience is the opposite of this. So far any help we have had for my mother we have found ourselves with no help from GPs or local authority and of course have to pay for everything. So better informed and trained GPs, local authority workers ie social services etc.

      • Juliet Smith says:

        I believe the skill level of care homes needs to be radically raised. Unfortunately, this all seems to be governed by money. Many care homes are privately owned and the staff poorly paid and this “commercial” approach cannot provide the care required as profit is being sought at minimum outlay. Training is expensive and therefore undertaken only when unavoidable.

        I think the best thing that could happen in this country is for the government to support care in the community and help families to care for their old people in their own environment. Perhaps improving carers benefits in order to ease the financial burden and providing family carer training so they are better able to navigate the bureacracy.

  26. Esyllt Sears says:

    - Make carers feel involved

    – Enable sufferers to stay at home and provide care there if that is the family’s wish

    – Create vibrant homes not quiet, clinical homes where elderly people sit around staring at each other all day

    – Create profiles of each patient to include hobbies, previous work, family life etc… and focus on some of these elements to create familiar activities or environments

    – Enable sufferers who are in care homes to go on home visits

    – Also, in Wales, ensure plenty of Welsh-medium care – my grandfather was a Welsh speaker but all his professional carers only spoke English. This would have helped my grandad feel at home if they’d been able to speak Welsh.

  27. Sue says:

    More trained community dementia nurses are needed to support patients and particularly their carers at home. Not all of us want to join groups. My partner has always been a loner so groups don’t suit him which leaves me very isolated. I have found our community psychiatric nurse to be little more than a referral agency who provides no support at all. Most days I am reduced to tears by my situation…especially when our CPN tells me that she will visit again in one year!! “care in the community”? I don’t think so!

  28. Elizabeth Jones says:

    There is just one word as we all know that would make a huge difference to all those suffering and caring for Dementia patient yes you guessed “money” I am working as a volunteer for my local Alzheimer’s group and we meet once a week to sing for the brain just one of many groups throughout the country helping sufferers and carer’s have a couple of hours of productive time doing something that gives imence pleasure to what in some cases are rather miserable life’s .
    Unfortunately there is now uncertainty over the local funding of many of these activitys and a lot will just disappear . Mr Cameron can stand up and make as many promises as he likes the plain truth is he is NOT prepared to back up his promises with the funding consequently the growing dementia problem in the UK will deteriorate faster than we can imagine and we volunteers just have to stand by and watch this happening !

  29. Roger King says:

    I must refer back to the headline of this page – How could health and care for people with dementia and their carers be improved?
    My question is “what care”? As there is no care, it is difficult to know where to start. My wife has vascular dementia, diagnosed in 2007, Aricept was tried and it failed. With that we were crossed off the list, now we are not even a statistic, we are not included in any figures, because we are not on the list.
    My wife lives at home, and we have the benefit of a succession of living in carers, these are dedicated ladies with heaps of experience with dementia. They are very special and have to have incredible patience.
    I would like an annual or preferably more frequent, visit from a nurse or GP, just to see how things are. As there is no treatment or medication, from time to time we try changes and homeopatic medecine. A couple of these made big improvements to my wife, but as there is no monitoring of our situation, nobody finds out and it does not get passed on to benefit others.
    My wife is getting into the last stages with serious speech and cognisant problems. Because she is fit in herself, it is rare to see a GP, so there is nobody at the surgery that knows her.
    I am not bothered with how many sensory gardens are available or sing songs. An occasional bit of interest from the NHS is all I ask for.
    Roger King

    • Sue says:

      Dementia devastates families who are very alone in their pain and grief.

      There is a great lack of:

      Care
      Support
      Interest
      Knowledge
      Skilled Nursing
      Treatment
      Funding
      Quality Specialised Care Homes

      • Jeanette says:

        I agree. The care homes for people with dementia are often second class facilities. One manager advised me ‘We can’t keep the place nice because of the dementia residents’.
        As a society we need to wake up to the devastation of this illness and not just shut people away subjecting them to a meaningless life. We cannot care for sufferers of dementia if we are unwilling to invest – our current dementia care structure is cruel, fragmented and unstructured. We need clear treatment strategies and inspection of care home facilities to prevent the torture of dementia sufferers final years.

        • Carol Sacker says:

          I agree, more investiment into specialised dementia care services, including free counselling for those who are suffering distress from loss and grief and who need to come to terms with these aspects.
          More private care homes investing in care staff specialist training for dementia and investiment into a meaningful specialist dementia care environment and structure.
          Committed staff time with people with a dementia who can interact with them on a meaningful level.

  30. Holly says:

    Are these the right areas for action?

    Yes, because they determine the sufferers quality of life.

    Do you have any evidence or good practice relating to dementia health and care services you could share with us?

    What would be interesting is study the difference between intelligent, fit, employed people and the opposite (not very intelligent, nor fit, nor employed/ working in a lower classed job not a profession). Horrible, I know, but from what I’ve seen, I have seen loads of intelligent, fit and healthy people with dementia, and no fat, unemployed people with dementia. Because of this, I am very reluctant about the “facts” that being healthy, doing exercise, will reduce or lower the chance of dementia. I have a theory, that as we all know, the brain, when learning something new creates a “path”. Each time this learning experience is repeated, the path gets stronger. However, should you spend years repeating this behaviour and then suddenly stop (eg retirement), I believe these “paths” to start breaking down, and so you have a build up of plaques (Disclaimer: my own opinion, not backed up by anything, nor am I a researcher). In order to advise people ways to reduce dementia, there needs to be a lot more research. Some people now believe, that taking one piece of dark chocolate a day will help…where they got this information from is probably some tabloid newspaper, with little scientific explanation. We need to squash out these rumours in order for people to start taking dementia seriously. As for the listening to music, looking at photos, whatever else- I believe these to only work with onset Alzheimers- they will not work with advanced alzheimers, nor will they slow it down or even cure it. They simply allow the sufferer to try and recognise a song or photo, which depends on the sufferer and the advancement of the disease, since everyone is different, and all types of Alzheimers is different.

    Carers need to be given a lot more support and help, especially from family and friends, which relies heavily on awareness. Carers need to know all the different services available and how to access them, as well as be able to speak their mind about improving the services or creating a new one. Getting someone diagnosed is still a problem. Sufferers are often reluctant to be taken to the doctors, since they might believe that there is nothing wrong with them. Once you get around that, the doctors talk to the sufferer. But when the sufferer claims their memory is fine, and the carer says otherwise, things can get complicated. In the case of my dad, the doctors supposedly sent a referral letter to the hospital’s memory clinic, and told us there was a waiting list. 1 year later, my dad being young and so the disease is more aggressive, my mum phoned the memory clinic to ask if they could see someone, but apparently they had no record of my dad being referred! An entire year of my dad’s life was wasted, because the doctors did not think it was serious, possibly because of my dads age. They then said there was a 6 month waiting list…my mum broke down on the phone. Eventually, when my dad had been referred, we found out the hospital had received the original referral letter! Also people being told that they can apply for power of attorney, you can’t, but you can get court of protection.

    The biggest problem is when home is no longer an option, and the carer needs to look for an emi care/nursing home.

    I have already ranted about the staff, on the other question, so I will talk about the difficulty finding a suitable care home, the facilities and the cost.

    Where I live there are several care homes and 4 nursing homes. All of these seem to be full and cannot deal with younger alzheimer sufferers. The facilities, I suppose, are good for the onset sufferers, as playing pool and gardening, is nearly impossible with advanced alzheimers. The main problem is the cost. If you have savings (including property) over £20,000 you will be expected to fully self fund the fees which can be £22,000 and more per year. This means that saving for your childrens future, making wills etc are a waste of time. A new white governmental paper has been passed, and it makes me sick. If you find you are unable to self fund the nursing home costs, you will have to take out a loan, which you will pay back when the sufferer dies. Which means it is often the younger generation who will have to pay, as it could mean selling the house, using all the savings etc. I would only expect to be paying £22,000 per year, if I was living in a 5 star hotel. Lets face it, the average nursing home basically consists of beds, chairs, tables a tv or two, a garden that is never used, facilities that half the sufferers can’t use, toilets and food. Nothing fancy.

    The obvious, ideal solution would be to have more awareness of alzheimers, more money donated, more research and either a prevention or a cure. But in the mean time,more effective treatment/medication, more care/nursing homes need to be built and slash the costs, please. Of course, its only the working class that suffers, rich people can afford this easily.

    What can you or your organisation do to help deliver the actions?

    Personally, would like to see the government make a lot of these changes…

  31. Jackie says:

    Better access to individuals plan of care for family members and each dignosed person to be allocated a care co-odinator early on to liases with all family memebers who will be involved in their life be it carer or regular visitor to give spouse or carer a break.
    We find that as we don’t live with Mum we don’t actually know what is happening from the professsional side of things, Dad’ sability ane energy is limited, mum is adament there is nothing wrong and we constantly see dangers around noncompliance of medication, self determining of over the counter remedies, claiming illnesses at the GP coming home with yet another health care medication, God knows how this affects her condition, but as we don’t have LPA for health noone has to talk to us, but it is us who will have to pick up the pieces when there is s problem.

    Consideration to family rights to information and knowledge of how to gain these types of rights.

  32. Holly says:

    Legalise Euthanasia- you wouldn’t let a dog suffer, you would get called cruel- so why let humans suffer, when they are at the end stages, lying in a bed, unable to communicate, or do anything? Not even the relatives of sufferers think it is fair to see their loved ones slowly die.

  33. Caroline Baker says:

    Four Seasons Health Care, the largest independent health and social care provider in the UK, developed the PEARL programme (Positively Enriching And enhancing Residents Lives) in January 2008 to assist our dementia care units to progress towards centres for dementia care excellence.
    PEARL is based around the work of Professor Tom Kitwood, Professor Dawn Brooker, Christine Bryden and the NICE guidelines and was aligned to the National Dementia Strategy Outcomes and CQC outcomes when they came into fruition.
    We now have 55 of our homes through the PEARL accreditation process with a dedicated team of 10 Dementia Care clinicians to assist our other homes to go through the programme.
    PEARL aims to ensure that both the service and environment is shaped around the resident. There are over 160 criteria that homes need to meet over a 12 month period to achieve PEARL status that include person-centred approaches, person-centred care training, pro-active and person-centred documentation, Life Story Work, Dementia Care Mapping, relevant and meaningful activities, reduction of anti-psychotic medication to name but a few.
    The improvement in outcomes following the introduction of PEARL is compelling and shows an average reduction of 52% in the use of anti-psychotic medication, improvements in weight gain and objectively-measured well-being levels along with improvements in depression scores and pain levels.
    Four Seasons, as an organisation, supports the Dementia Challenge and would be very happy to contribute to the programme in any way possible.

  34. fiona says:

    My Mother’s diagnosis was long and hard and only happened because my sister and I knew there was something seriously wrong and we would not accept the Dr’s comment “you do very well for your age – 80″. GP’s need more training for starters. Secondly communities have little understanding of dementia and the physical changes that occur to the brain which cause massive changes in a person’s behaviour and personality: our dear Mum lost all but one friend due to her paranoia and anxiety and other symptoms. And of course there is the great schism between social services and NHS: what a dreadful state of affairs this is. My Mother is finally in care but not before some shocking long drawn out debacles about how ill she was, whether she could access the care we wanted etc and serious breaches of professionalism by social services.. Mum’s paranoia was so bad we could never talk to her about POA or selling her home. This went on for years despite the aforementioned GP’s observations. Mum even thought my sister was stealing her false teeth to raise money! The fact we soon have to tell her that the council will now sell her home is heart breaking- in her mind it will be everything she was paranoid about is actually about to happen . She is in residential care currently but what happens if she needs nursing care further down the track? What if one day she wants to go home? We have had no information from social services about how to handle this issue: all they want is her house sold and money. I realise Mum will need to pay her way but the whole way this has transpired is an absolute disgrace and quagmire of no information and social services vs NHS. It’s about time people with dementia were afforded the same dignity as other sick people receive. It is a harrowing disease. It ultimately leaves a person friendless and homeless.

  35. Beth Britton - D4Dementia says:

    Following my father’s 19-years with vascular dementia, I set up D4Dementia (http://d4dementia.blogspot.co.uk/). My aim is to provide support and advice to those faced with similar situations, inform and educate the wider population, promote debate, and campaign for improvements in dementia care and changes to the health and social care systems.

    Over the years our experiences have been very varied, from the excellent end-of-life care that my father received, that every health and social care professional could learn from (http://d4dementia.blogspot.co.uk/2012/06/end-of-life-care-very-personal-story.html) to horrendous problems when the care home system fundamentally fails to care (http://d4dementia.blogspot.co.uk/2012/07/from-care-to-catastrophe.html).

    At the heart of all great dementia care is personalisation, compassion and dedication. Seeing the person, not the disease, and valuing everything about them is vital to bringing quality and richness to the lives of people with dementia. You can live well with dementia, my father did for many years with the dedication and love of his family, and some amazingly empathetic and caring professionals. Empowering people in the early stages of the disease and nurturing them throughout their journey, finding what works for them personally, building on that, adapting and being flexible, are all key components of caring well for people with dementia. It is also vital to support people’s hobbies and interests, and through that provide therapeutic dementia care that will alleviate symptoms and bring joy and happiness. There are also some pioneering design and technology solutions for helping people to live well with dementia that would benefit so many more people, and their carers, if only they had access to them.

    I have always felt that it was a huge privilege to support my father through his dementia journey, and if we can engender that same spirit throughout dementia care, then the UK will have responded well to its dementia challenge.

  36. Dr Daniel Harwood says:

    I am writing from the perspective of lead clinician of a specialist (secondary care) Memory Service. My comments relate mainly to the provision of specialist memory service care for people with dementia and their carers.

    The configuration of memory services around the country varies enormously. Some services operate a medical model of service with a specialist memory clinic but little follow up or support in the community, others offer a primarily community-based service but have limited resources.

    In my view services need to be standardised across the country. In the treatment of colorectal cancer or childhood leukaemia there are fairly standardised care pathways, but for dementia, an illness of comparable severity, services seem to be delivered in a rather haphazard way. There are some core principles which every service should operate to- and these need to be standardised across the country. The principles of a good service are:

    1. Flexibility in service provision. People should not be denied diagnosis or treatment simply because they or their carers are unable to travel up to a Memory Clinic. Services need to provide home visits by specialist staff to patients own homes and residential and nursing homes- as well as appropriate outpatient clinics.
    2. Specialist memory services should offer care from the point of diagnosis right through to palliative care. Obviously they will not be involved all through the patient’s illness- but should be able to get involved if there are specialist needs at any point along the care pathway.
    3. Interventions provided by specialist memory services should be evidence based and in accordance with NICE guidance or other national guidance. All interventions should have outcomes measured by standardised and validated outcome measures (as well as the mandatory HoNOS ratings).
    4. Commissioners should commission services from the Third sector and other providers to provide seamless care- for example the role of the dementia care advisor in some areas is a good way of managing queries from patients or carers who’ve been diagnosed by specialist service and just need some simple practical advice. Similarly social and supportive day care is extremely useful and enjoyed by patients and valued by carers- but this is not something specialist memory services should be providing.
    5. People with dementia and their carers should have quick access back to specialist care if they need it and should not be blocked by bureaucracy.

    There is a role for the Royal College of Psychiatrists Memory Services National Accreditation Programme to take more of the lead in stipulating the type of services that are appropriate. As a clinician I am much more likely to take advice from a fellow expert clinician rather than a Department of Health document. It is important that MSNAP retains its important role in advising supporting and encouraging service development rather than moving to an organisation which polices services in a dogmatic and bureaucratic way. The latter approach alienates clinicians, causes low morale and in the end, impairs the care of patients.

    I am also concerned at a trend which seems to suggest that non-specialists might have a more extended role in the traditionally more specialist areas of dementia care. For example I have heard some expressing a view that primary care staff, and relatively junior nursing staff can make a diagnosis of dementia. Of course it is very easy to make a diagnosis of dementia in someone with severe dementia, but diagnostic assessment by an expert clinician is more sophisticated than this and will look at contributory factors to the cognitive impairment, advise on necessary investigation, and advise the carer about the causes of the illness and its prognosis on the basis of experience and expert knowledge. When someone has a serious physical illness such as multiple sclerosis or cancer – people rightly expect to be diagnosed by a consultant physician or a specialist nurse – why should this be different for a serious illness like dementia?

    In summary then- I’m advocating that specialist memory services become more focused, more evidence-based, but see patients at points all through their journey from diagnosis to end of life whenever their specialist expertise is needed. Quick and easy access back to specialist services is essential- as is the provision of third sector and other services to provide non-specialist carer support, respite, and advice- otherwise the specialist services will be overwhelmed.

  37. Rebecca, north west says:

    My great aunt Suffers from dementia , but her full time career and husband is the one who suffers the most. As a proud man he finds it hard to see how dependent she has become . They live in a remote area of the south west where health care is sparse and limited. They have no outside help, no children, no car, minimal public transport. What used to be an idyllic hideaway is now confining. For a man who has worked in the public service all his life it seems so unjust that they receive almost no home visits and no care.

  38. Victoria says:

    A faster diagnosis – better training for GPs; better access to the limited number of drugs to delay progression without having to fight every step of the way for them; less reliance on anti-psychotics, lorazepam and diazepam; better training for people who provide homecare support services and a smaller rota of people to reduce further confusion; stimulating caring care homes particularly for those with young onset Alzheimer’s where the business element of their operation isn’t prioritised; capped personally funded care at £30k; and current system of selling your home, supported with a loan from the local authority if you don’t sell your home within 12 weeks to pay for your care on top of the challenges of being left to your own devices to find care, medical and support solutions for your loved ones yourself if they get an Alzheimer’s diagnosis. My mother has young onset atypical (PCA) Alzheimer’s and is now in a loving care home, her home has been sold and she is beyond the limited medicine available but the last 3 years for me and my family has been incredibly tough and enormously stressful. We all wished my mum had a cancer diagnosis rather than Alzheimer’s as the care and support for cancer sufferers seems to be much better than the governments consideration of dementia care. The government must wake up urgently to the huge dementia problem, they need to think ahead, now. I would add that the Alzheimer’s Society are amazing and if they didn’t exist particular with the current lack of government support and care, many sufferers and their families would be left desolate. A considerable grant for the Alzheimer’s Society to do more of what they’re doing would help in the short term as they understand what needs to be done. Victoria

  39. Sue says:

    Reading all these comments it is obvious there is no lack of knowledge and enthusiasm, either among professional or private individuals or organisations. Please join it all up, I hope so much that it will all come together in one place soon, if not for me then for my children and grandchildren. Currently the only place is the internet and an awful lot of trawling for information, help, ideas, any light one can glean to put an end of this dreadful tunnel of darkness and confusion. I have tried to care for mum for almost ten years. The only diagnosis was a note on an ex-ray form I happened to look at, The doctor appologised saying it should probably have said ‘dementure’. Was that the diagnosis? I had laboured for years under the belief that her symptoms were caused by her medical conditions, mostly diabetes, or constipation or urine infections, or the drugs she takes, or more to the point the creeping depression brought on by a body which just would not work for her. That depression greatly increased on receiving the attentions of Agency Carers (an area that needs a lot more attention and serious safeguarding than it gets – ask the carers not the regulators). That first week she said to me “I have lost all my dignity”. In a period of months she had deteriorated – I know she tried hard to assert her dignity, and self respect. She gave up and within those few months I lost her. She had no therapy, no counselling, no dedicated team or even one person who might have helped her, and a GP who wrote her off long ago. I tried to fight for her, me, all alone against a mess of a system seemingly hell bent on killing her off. Now I have to watch her go into ‘care’ – unwillingly. My health has been compromised, soon it will be my turn.

  40. Carol Sacker says:

    I feel so very sorry for you Sue, as a professional and a daughter whose Mum also had a dementia. Although diagnosed much later, although I already knew from my working experience of people with a dementia and their families.
    I am afraid society as a whole has let people down like yourself, who deserve good information, support and counselling (if required). Things have changed but they have come about very very slowly. I feel that people’s attitude needs to change and education education education is the key to person centred dementia care. Along with time and the willingness to look at different ways of working and caring for people with a dementia.

  41. Andrew McCaddon says:

    We need to raise awareness amongst physicians and general public alike that there is a proven modifiable risk factor for dementia. Homocysteine levels are associate with cognitive decline, brain atrophy and incident dementia. There is now good evidence that lowering homocysteine levels with high dose B vitamins can slow cognitive decline, reduce brain atrophy and prevent conversion from mild cognitive impairment to dementia (for example, see latest paper from VITA study in Vienna). Patients with memory impairment should be screened for high homocysteine and have high levels treated.

  42. Chris Whittingstall, RNMH says:

    I am the Clinical Team Leader of a specialist (secondary care) Memory Service in an area whose elderly population is high and rising at a steady rate. It is a multidisciplinary team commissioned to deliver the National Dementia Strategy.

    Improving diagnosis rates.

    We are improving working relationships with GP’s to improve diagnosis rates. It is felt that it is paramount to get a good early diagnosis that will enable the patient and their families to plan ahead and agree their care pathway.

    The National Dementia Strategy highlighted that only about one-third of people with dementia receive a formal diagnosis at any time in their illness. And when the diagnosis is made, it is often too late for those with the illness to make choices. Also, the diagnosis is often made at a time of crisis; a crisis that could potentially have been avoided if diagnosis had been made earlier.

    Better care in all settings

    We as a service work very closely with the Care homes. There is increasing evidence that training care home staff can improve outcomes for people with dementia. Reportedly, quality of residential care for people with severe dementia is in urgent need of improvement. The Alzheimer’s Society highlight that a well supported workforce, who is confident in their skills, will be better able to provide excellent care to residents with dementia. We have offered training in the homes to allow them to focus on the areas that they find challenging. This helps to identify gaps in learning in relation to their own care- giving environment, and identifies areas for development.
    Members of the local Care Home Association attend regular monthly meetings to maintain links and to develop best working practice and evidence based practice within the homes.

    Support for carers and families/A wider approach to information.

    Because of the close links with the care homes, we have been able to support several Alzheimer’s Cafés within our location. This offers peer support and reassurance for carers and families

    We understand the importance for people with dementia and their carers to be supported and cared for by a trained workforce, with the right knowledge, skills and understanding of dementia to offer the best quality care and support. With this in mind, as a service, we established, and continue to run, a Post Diagnostic Counselling support group for newly diagnosed patients with dementia and their carers. People are offered the chance to meet other couples sharing similar experiences and given the time to talk and offer each other support. It is believed that people can develop better coping skills by facilitated education and learning to live well with dementia.

    Reducing the inappropriate use of Antipsychotic medication.

    We as a service are working very hard to educate people in the importance of non-pharmacological interventions for people with dementia. In a recent audit by the Royal College of Psychiatrists, we were evidenced to have to lowest prescribing rate over 52 trusts.

    A Dignified Death

    We also work very closely with homes and care settings with regard to end of life care. We have nurses and care professionals that work in association with the hospice to ensure a dignified and supported death.

    Summary

    I, as a professional working with people with dementia, do find it distressing at times when faced with the disparity of service that appears to be happening in all areas, as some of the comments here, and media reports, suggest that some services in other parts of the country do not provide the breadth and scope of support that is needed. I feel fortunate in working in a service that does provide more, and, being accredited and regularly assessed and monitored within the Royal College of Psychiatrists Memory Services National Accreditation Programme, will continue to do so.

    I feel it is important to keep the specialism within specialist teams to continue to provide seamless care along the individual’s pathway. To entrust the care of these patients to a generic service cannot provide the in-depth, holistic care that is essential to ensure a ‘managed’ illness and provide support and re-assurance to families and carers.

    It is also my experience that friends and neighbours are very good, and an important part of the support network, needed to provide some elements of care, but cannot always maintain the amount of time and energy that caring for a person with dementia demands.

  43. Andrew McCaddon says:

    We should increase awareness amongst physicians and general public that there is a proven modifiable risk factor for cognitive decline and dementia, including Alzheimers Disease. High blood levels of the amino acid homocysteine are associated with an increased risk of cognitive decline, brain atrophy and incident dementia. Homocysteine can be lowered by high dose B vitamin supplements. Lowering homocysteine slows brain atrophy and delays cognitive decline. B vitamin supplementation over 5 years reduces the rate of conversion from MCI to Alzheimer’s in a recent European study (the VITA cohort). Patients withies cognitive impairment should be screened for high blood levels of homocysteine and treated accordingly. From an epidemiological viewpoint this is estimated to reduce the risk of dementia by 20%.

  44. Sian Bayer says:

    The number of vulnerable people on general hospital wards with dementia is rising.Patients with dementia are more likely to have an increased length of stay and be more susceptible to hospital aquired infection.They need a high level of care in relation to their needs.
    Extra time and support is required in the areas of nutrition,personal care,communication difficulties and pain management.Emotional distress and behavioural problems also need to be addressed and managed sensitively and well,as these issues present a challege within the general ward setting among other physically ill people.
    There is a need to ensure that staff working on general wards have the skills and knowledge to manage the care of patients with dementia.These patients are often unable to express their needs for help or pain relief.Liaison nurses from a Memory Service, such as the one I manage, go into the general hospital wards every day to provide support,specialist expertise,knowledge and sharing of skills to staff on wards to assist them.The skills provided are targeted to support people with dementia but are useful when supporting any patient,especially those who are particularly vulnerable.This group of patients also benefit from befriending services as they often have no one to visit them at visiting times.Hospital volunteers can be supported to provide this role as they are in the hospital in which I work. Liaison nurses working from the Memory Service team frequently comment that one of the biggest requirements of staff and one of the most difficult to fulfill is the need for time to spend with patients with dementia.
    On busy wards as well as in residential and nursing homes,staff are often rushing to complete tasks and need the training,understanding and the time to provide people with the interaction and support they should have.
    Specialist teams within Memory Services, with trained and knowledgeable staff need to be available to provide this educational hands on training and support to staff in hospital and care home environments but also to support carers in their own homes so that levels of understanding and expertise are raised within the wider caring community to improve standards as well as the experience of care by those receiving it.
    Specialist services will never have the capacity to manage the demand for the care of everybody who needs it all the time.It is essential that a culture is developed by specialist services to include and involve a full range of carers in being able to provide high quality,meaningful care across the full spectrum of dementia care.Specialist services need to offer excellent practical support and advice and the sharing of knowlege and skills.

  45. Diana Milburn says:

    I agree with most opinions that have already been written, and we all seem to have a different experience to relate. However, it all ends in the same situation.
    My husband was finally diagnosed with Alzheimer’s 8 years ago, after some domestic experiences that I could write a book about!! He was in his 60’s when it became apparent that all was not right with him, although he was extremely fit and well. I was told there was a waiting list of 42 weeks to attend the local Memory Clinic, so I paid privately for him to see a specialist at the Priory Hospital who gave him the diagnose which then enabled him to qualify for the drug Ryminil, albeit from our own pocket. However, as if by magic we were then offered a Memory Clinic appointment, and he was accepted into the NHS system. This upsetting time then set the behaviour pattern concerning his care for the last 8 years. I have had to fight and moan and get upset with all providers, practically every time he has needed help. Thank God that I have managed to remain strong during it all, and I can’t imagine how someone in poor health would cope with it all. My lovely husband has been in a nursing home for 5 years now, and I am still fighting every day just to ensure that he gets the care and attention that he needs to keep him clean and comfortable.
    Why is Dementia the poor relation of the medical world? I think that all Medical and Nursing students should spend part of their training in a Dementia Care Home, so that they can see exactly how this disease strips a human being of all understanding and dignity. My husband is now 100% reliant on assistance for every single bodily function as his brain slowly forgot how to carry out even the most simple of tasks that we all do on a daily basis without thinking about it. He hasn’t spoken to me for a long time now, but the other day I pushed him to the pub in his wheelchair and we had a Coke. As I was talking to him that we must do it again as he seemed to enjoy it, he looked me straight in the eye and said “Yes”. What joy, which made all my hard work and efforts so worth it!!!

  46. Roger King says:

    When I wrote earlier, my request was for some attention from qualified people, that previous requests for sing songs and sensory gardens, should only come after basic care is established everywhere.
    Reading later comments, it appears that in some areas of the country, there are the facilities that I asked for. Why can’t these be rolled out all over the country.
    I am made to feel that I am the first person, ever to have a wife with dementia, because there are no care facilities available from the NHS. Do they think it is something that they should not treat, or something that they dare not open their eyes too, because it seems like an iceberg – an enormous amount hidden under the surface.
    Roger King

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