Support for Alzheimer’s


Tonight, on Dispatches (Channel 4 – 8pm) is going to be looking at support (or rather the lack of support) that is available for people with Alzheimer’s Disease and their families and carers in the UK.

The Guardian ran a brief story with Fiona Philips

(who will be presenting the programme) over the weekend. She is a breakfast television presenter who quit the ‘day job’ this year in order to spend more time looking after her father and her children.

She has been researching care for people with Alzheimer’s and commissioned

A YouGov survey of 767 carers of Alzheimer’s sufferers reveals that 27% of sufferers waited three years or longer for an official diagnosis. Another 17% never received one.

Philips goes on to explain some of the further findings of the survey

The shocking findings of our survey of carers revealed that 41% got little or no respite care and more than half received no help at all from social services. In addition, I discovered that some victims never get a formal diagnosis.

The survey also found that 19% of carers sometimes or often feel threatened by the sufferers they care for. Two-thirds said they would like training.

Now, working within a service that provides support and care for people with Alzheimer’s, this survey and the implications of it, did hit home to me.

There is, without question, a question of resourcing. I am also aware that while we now (with our new configuration) have a spanking new ‘Memory Clinic’ which has been specifically set up to speed up diagnosis and information – that has only been in place for a couple of months. I think it is an aspect of care that will be promoted when the government implement their new ‘Dementia Strategy’.

It may go some way towards signposting patients and carers towards assistance that would be available to them.

Support is more of a mixed bag though.

The team I work in does not see people who have dementia unless there are what is referred to as ‘management difficulties’ or ‘consistent refusal of care’.

In other words, someone that has dementia at an earlier stage will, after receiving diagnosis, be referred back to the Community Care Team to put in care and provide support – the idea is that the Memory Clinic will retain contact and medication (if necessary) while Social Services will be involved if direct care or carer support is needed.

We get the referrals back when things usually reach a later stage and things begin to fall apart either by refusal of care or carer stress becomes more evident.

What is obvious is that without initial diagnoses it is hard to access these services.

More than a few times, I have been to visit people and noticed that their spouses are displaying very obvious symptoms of cognitive impairment and refer the spouse back to the team myself. I wonder if I had not been already present in the situation, how likely it is that those people would have received referrals into our team and into the formal support services that exist.

Without doubt there will be a question of resources and the amount of people who could benefit from services versus the amount of resources that are available.

Anyway, it will be interesting to see the programme and I expect to comment after the event.

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8 thoughts on “Support for Alzheimer’s

  1. I wish we could get that programme here as it is a cause close to my heart: during my mother’s illness I learnt something of what carers go through and I don’t know how they do it long-term. My mum had stroke-related dementia. It was just 3 months between knowing something was very wrong and her death and there was no diagnosis until post-.mortem. Thnk you for continuing to highlight the issues.

  2. Hi there- I’ve been reading your blog with interest and wanted to introduce you to WhereforCare. Whereforcare.co.uk is the childcare and carehomes ratings and reviews information website where those who have experience of care, such as parents, relatives and professionals are encouraged to write about their experiences in order to help those who are looking to choose the right care. If you have an opinion on childcare or carehomes in your area, feel free to write a review at http://www.whereforcare.co.uk
    Thankyou.

  3. Thanks, WL. It’s a shame it can’t be shown overseas but at least the focus continues to be in the public spotlight. Basically more funding would be useful and the more public attention there is to the issues and difficulties that are faced by people who have dementia in any form, the more likely it is for the funding to come because funding is usually political.

    W4C – interesting site. Good luck with it.

  4. Watched with interest as Father-in-law was affected. However, couple of points.
    It IS possible, although extremely difficult, to get funding for NHS Care for Alzheimers patients. We did, although retrospectively. On “freenursingcare” (an MSN group) there are some horror stories of people who have been battling hard to get care support for Alzhemers patients.
    Stroke etc patients don’t, in fact, have it much easier. PCT’s appear to assume that patients will self-fund unless, too often, they are pushed into it, and too often (again see “freenursingcare”) they are faced with a bureaucracy which says no, and then puts all possible obstacles in the way of review.

  5. Recorded it last night; am going to sit down and watch it. From my own experience, I would say that you can get help, but you have to shout loud and long to get it at first. Once you actually enter the system it gets easier, but I suspect a lot of people never get past that first stage. If memory clinics help that, then so much the better.

  6. Caregiver burnout is a major issue for those with this awesome
    responsibility. Don’t overlook the role of humor to make things more
    bearable. Things that made me angry and frustrated when my mother (who had dementia)was alive, in retrospect are filled with funny happenings. This is true too for the many caregivers who read my blog and contact me about my book which emphasizes humor as a healing balm. Caregivers need all the emotional support they can get. Dementia is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It will not spare ex-presidents or ex-prime ministers. It did not spare my mother. Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia.

    Bob Tell, Author
    Dementia Diary, A Caregiver’s Journal
    http://www.dementia-diary.com
    http://caregiverchronicle.blogspot.com/

  7. Miall – Continuing Care and NHS funding is horrendously difficult and in my view, it is too hard to access across the board for very obvious reasons (it’s expensive). I hope more people are able to use support groups to access the funding that they are entitled to.

    Julie – I think you are right. I found the programme interesting but frustrating as I know there is a lot of good work that is happening and support that is available but it is that initial entry into the ‘system’ that is troublesome and hopefully is being made easier.

    Robert – thanks for that. I’ll have a look at the site!

  8. whilst recognising the value of raising the issue, I was in mixed minds about the humanity in showing how far back her father has gone.

    My experiences of dementia care are mixed but I do think the largely lack of health care funding is shocking.

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