Dementia Friends

The Department of Health has, today, launched the Dementia Friends scheme.

It’s a lovely scheme to promote greater awareness of Dementia by recruiting an army of  volunteers. These volunteers will be trained to have an ‘understanding of dementia’  As the website itself says, if you become a ‘Dementia Friend’

We’ll equip you with an understanding of dementia and how you can help, and the rest is down to you. We want Dementia Friends in every community – in every hospital ward, post office, place of worship, and on every street. Our target is to reach a million people by 2015, and we’re confident we’ll not only meet this target but will beat it

Wow, that’s great. Really it is. I’m (for once) not being sarcastic. I work with a lot of people with dementia and having to explain it to them and their family members, I see the fear and lack of understanding and I wish that there were a greater knowledge in dementia in the community and this seems to fit the bill.  In my social work training course, over two years, I had one lecture on older people – I can’t even remember if dementia was mentioned. That’s plain wrong. It needs to be a meaningful part of every training programme and on many courses.

First I thought Dementia Friends would be like a massive new befriending scheme for isolated people without family and friends and excluded by community  as the site says

Alzheimer’s Society research found that nearly two thirds of people with dementia feel lonely, and almost half reported losing friends following their diagnosis. With one in three people over 65 developing dementia, it’s vital we change this picture.

But reading more I see its  about encouraging people who are Dementia Friends not to abandon those of their family, friends and social circles who have dementia and  not to ‘drop’ them as the illness progresses. Which is also a very good goal.

I guess I just see a disproportionate amount of people who don’t have family/friends/social networks or maybe I’m seeing them after their networks have abandoned them.

Early Diagnosis

One of the aims of this scheme is apparently to encourage earlier diagnosis of dementia. Again, a very laudable aim. The Guardian previews Cameron’s announcement

Cameron will say: “Through the Dementia Friends project, we will for the first time make sure a million people know how to spot those telltale signs and provide support. There is still a long way to go in fighting the disease, but together we can improve the lives of millions.”

The scheme will provide free coaching sessions on how to spot the signs of dementia and provide support to people with the condition.

Each Friend will be awarded a special “Forget-me-Not” badge once they have completed their training, so that they can be easily identified as being able to assist people with dementia.

So when the dementia (and remember there are lots of causes for forgetfulness and confusion other than ‘dementia’)  is ‘spotted’, I imagine the hope is that the Dementia Friend will encourage the person they have potentially ‘spotted’ to get screened.

All good. Again back to the Guardian which says

The rate of successful diagnosis is expected to double from 42% at present to 80% – a target set by Cameron earlier this year when he launched his challenge.

Healthcare professionals will also be required to ask all patients aged between 65 and 74 about their memory as part of their standard health check. Simple diagnostic tests will be expected to be done on site, cutting waits that at present can be as long as 18 months.

Post Diagnosis Support

So we are able to identify and diagnose dementia earlier. Really that’s great. It allows people to have more time to adjust and to make plans regarding their needs in the future. We have more people who are aware of the needs of people with dementia in their own social circles and prepared, we hope, to be more tolerant and supportive.

However we can’t allow the happy clappy Department of Health talk to get away with the fact that dementia services and provisions have been slashed to bare bones. There is little left to provide to people who have early diagnoses, particularly if they don’t have that family support because the resources just are not there.

I’m all for early diagnosis if people want that (and not everyone does but that’s an individual thing) but if this is the same government that has launched a savage attack on local authority social care services which were barely fit for purpose at the best of times then I can’t help but be cynical about some of these provisions.

I’d like to see more research and provision of different types of care both in residential settings and at home so we aren’t at the mercy of large private companies creating ever larger residential and nursing homes in suburbs where the cost of property is low that house up to 80+ residents with dementia in places that are difficult for family to access without cars.

I’d like to see some of this ‘dementia challenge’ money put into allowing local authority assessments to build cost of non-directed advocacy into support planning – that would make an immediate change in the quality of life of those with dementia.

I’d like to see some honesty around the poor quality care for people with dementia currently in social care and hospital settings. Maybe some of that money could be invested in paying care staff better and more importantly improving training.

Big Society

This is very much a ‘big society’ volunteer type role. Good luck for those who participate. I’ll likely join up myself but lets not forget that this means distribution of volunteers may not be equal and those who have no community as such will not have the same benefit of access to these who volunteer.

So a good initiative and well done but lets not forget that if the government aim is to increase diagnosis, they have to be prepared to put more money into improving what happens and what support is available after diagnosis.

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