Posts tagged ‘alzheimers’

September 21, 2012

World Alzheimer’s Day 2012

Purple

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

Alzheimer’s Society UK

SCIE Dementia Gateway

Dementia Resources – NHS Health Scotland

Register an interest in participating in research into Alzheimer’s (for those who have Alzheimer’s and carers) – via DeNDron

photo by Allie’s Dad @ Flickr

May 21, 2012

Dementia Awareness Week – My Wish List for Health and Social Care Professionals

Today is the start of Dementia Awareness Week. The Alzheimer’s Society are running a campaign ‘Remember the Person’ which is a good byline, if only it could be remembered.

my father enjoys the art at the nursing home

In the wave of headlines talking of ‘dementia timebombs’ and ‘care crises’ its unsurprising that the presentation of ageing and dementias (although important to note that dementia is not a part of the ‘natural’ ageing process) is seen in negative lights and that ‘remembering the person’ is often the last thing that happens.

This is important generally, but it is particularly important in health and social care settings when all too often systems have been commissioned and organised for people who do not have dementia – and services are not making allowances for the additional time and skill needed to be able to give people who have dementias the dignity of improved communication and facilitated communication.

While the Alzheimer’s Society concentrates on the ‘Remember the person’ in day to day life, I’d like to add my own ‘wish list’ to their campaign in terms of health and social care professionals, managers and commissioners and add a few pleas.

 

-Remember that caring for someone with a dementia, whether at home,  in hospital or in a residential setting, requires particular skills and commission appropriately. Time for training for staff and space and time to promote communication has to be built into commissioning costs. This cannot be done in 15 minute slots. It cannot be done by agencies that do not offer consistency of care. This is detrimental to the individual who is cared for and the family around them.

 

- Remember to support the family and friends of those who care for people with dementia. Do not punish a family financially and through pulling back support because you are relying on their family because the more pressure that is put on family carers without support, the greater the costs in terms of longer term ill health and distress. Support doesn’t always have to have a high financial cost. It can be about support in other ways and linking in with carers services. They are there for a reason.

 

But

 

-Remember that not everyone who has dementia has family or friends around to advocate for them or support them. When you roll out programmes like ‘personalisation’ and automatically assume that everyone wants ‘direct payments’ and deliver two tier qualities of service, they may (and currently do)  exclude those who may not be able to manage the direct payments themselves and who don’t have family to advocate for them. There is an imperative to bring the voice of people who lack capacity to the agenda of ‘choice’. My own solution would be to build in the requirement for independent advocacy into the processes and into the budgets. We must demand better in terms of personal care delivery for all, but especially those who cannot or do not feel able to (due to power imbalances) speak up for themselves.

 

- Remember that the person who is being cared for is not one of ‘the elderly’. They are a person and an individual  who has loved and who has been loved. They are a person with aims, ambitions and goals. They might not be able to express them as well as in the past but having memory problems does not mean that someone necessary lacks capacity or communication skills – it can though, take more time – regard humanity as having worth. When we have to make decisions on behalf of others, remember to treat everyone as you would want to be treated but remember not everyone wants what you would want.

 

- Remember not to dismiss or diminish those who have dementia. While, depending on the type of dementia ‘recovery’ can mean different things, what it absolutely does mean is not giving up hope and building on the strengths of those around. We have to think about living positively with dementia. Too often within social care and health services, I have seen other services discriminate against people with dementias and older people because they make assumptions which are dismissive. We should never make assumptions and never extinguish the hope of facilitating a better quality of life which build of the strengths of individuals. Never.

 

Let’s hope that Dementia Awareness Week is successful and makes providers and commissioners dwell on the need for awareness of the issues of dementia, as well as the ‘general public’.

photo by Susan NYC Flickr

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