Today, September 21st 2012 is World Alzheimer’s Day. The purpose of World Alzheimer’s Day is to raise awareness particularly of Alzheimer’s which the more common type of dementia.
I have a particular interest in Alzheimer’s and dementia. I think there can be a drive in policy to both marginalise those who have dementias and to increase the pressures on their families (where they have involved families) particularly as the amount of money in the ‘pot’ to deliver social care is reduced.
In the light of drugs companies announcing that they may be cutting back on investment in dementia research, it becomes more important to ensure that awareness of the needs of those with or who may in the future have a dementia remain at the forefront of the agenda of health services.
I think it’s important that amid the distress that an illness causes, we remember that a diagnosis of a dementia is not a sentence to misery. It is important that the quality of life factor is researched as well and that we don’t focus on the ‘misery’ of dementias as forgetting and losing the ability to remember is a very frightening thing.
Dementia still carries a stigma. I know the government refers to a ‘dementia challenge’ – subtitled ‘Fighting back against dementia’ but generally I like to think of it as an opportunity to think about the way that society responds in different way. What are we fighting? Shouldn’t we be working with and walking alongside dementia? We talk about an ‘ageing population’ and a ‘tsunami of people with dementia’ with an inherent negativity. While most dementias are not reversible, it’s importance that the tenets of ‘recovery’ are not lost in terms of losing hope around a person and promoting a more positive quality of life and environment for those with dementia and for their families where they have them.
By referring to a ‘dementia challenge’ and framing dementia as ‘one of the greatest challenges we face’ I worry that we remove the responsibility of society to promote a less stigmatising environment around people with dementia. It’s that social model of mental health again. Often dementias are forgotten by traditional mental health organisations because there are some differences but I’d like to see a lot of the developments in terms of user voice in mental health extended to dementia services and particularly towards users as well as carers as there is a propensity, particularly in older adults services to assume that the user and carer voice will be one and the same and can be interchangeable. I’ve been working in services long enough to know the importance of capturing user voice separately from carer voice and think that ‘lazy’ engagement is much easier than engagement which seeks out those who may have more difficulty communicating.
We need to ally Alzheimer’s and dementias with hopes and a focus on the person and not the illness. Not all dementias, nor all Alzheimer’s are experienced in the same way and the importance is the ability of services – as with all mental illness – to respond to the person and not to the diagnosis.
In my work it is one of the things I find most frequently – people (professionals who really should know better) make an assumption about someone with a dementia diagnosis – about what they can and can’t do/want/achieve. I want the stigma with the NHS and from adult social care to be challenged – that’s my ‘dementia challenge’ if I must use the government’s language.
I want the challenge to be held to statutory services. I want the challenge to be picked up by the NHS and Adult Social Care. I want funding to be appropriately focused to promote better quality of life for those with dementia. I want people with dementias to have a better say in their own services. I want residential, nursing, home and hospital care for people with dementias to be so good we don’t have to worry about it and we can have a confidence that services will be delivered which will help and not hinder personalities to be nurtured when the memory fades. We can deliver better services but the services have to be flexible enough at their core to accept and respond to different ways of doing things. That’s the failing of the system so far. There is a external fascia of ‘personalisation’ but the core of the services, commissioning and attitudes have not changed.
Social Care services for older adults have been struggling far behind, in terms of funding, those adults of working age. There needs to be a greater push on these discriminatory systems which act against people who have dementias and the government can solve it’s own ‘challenge’ by focusing on these issues.
We can make things better but the stigma of those who have dementia needs to be acknowledged by the public but also by the government, by the institutions of state that are responsible for the delivery of services, academic courses which train health and social care workers need to promote ageing positively rather than as a series of ‘problems’ and we all need to look for opportunities rather than ‘challenges’ of Alzheimer’s, dementia and old age.
Some good resources to read about Alzheimer’s and dementia
Modules from OpenLearn (Open University – free modules)
Fisher Center for Alzheimer’s Research Foundation
Dementia Resources – NHS Health Scotland
photo by Allie’s Dad @ Flickr
Unsafe Spaces 
A while ago I attended a members’ day at our local mental health trust. There was not enough time to attend all the workshops and so I opted out of the dementia seminar led by the Clinical Director of Elderly Persons’ Services to give me time to attend the art, relaxation and music workshops. The seminar was nevertheless well-attended, particularly by older trust members. At the end of the day I came upon the said Clinical Director who, somewhat like the Ancient Mariner, insisted on giving me a mini-seminar then and there. From it I gathered that he intended to cut down residential care for the elderly ill. Were they, therefore, to be looked after by community teams? Not exactly. It seemed his thinking was that district nurses could do most of the work in co-operation with the famil. Eh? What? Hereabouts district nurses have very low morale as a result of overwork and an attempt by Management to half their numbers and double their cacatchment areas in size. Neither are they mental health trained and very much see their role as physical nursing of physical problems. No doubt this is unfortunate but it happens to be the case. As to family involvement, as my wife said when I related this to her: “The poor old carers!” Indeed, literally old, as many of them are likely to be spouses. Oh dear, where do they get these people from? Governments and institutions can call all the days of this and memoranda about that they wish, neatly bullet-pointed by highly-paid non-clinical managers but none of it is any substitute for down-to-earth common sense.
down-to-earth common sense *coughs* *dies*
Interesting post. Slightly related to your article is that I was cheered when visiting a Christian bookshop to notice several books aimed at those with dementia and their families, working from a spiritual point of view and emphasising what people can do, and how they can worship, despite their challenges. I was rather pleased to notice them, as it suggests a shift in attitude at least in this small section of society.
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