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.
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
photo by Allie’s Dad @ Flickr