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.

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9 Comments to “Dementia Friends”

  1. It is nice that Mr Cameron has a target of reaching 1 million by 2015, mind you it has not been so nice for the estimated 1 million older people who have been abused in the last 2 years since this govenrment has been in power dithering over what to do about Safeguarding Adults. (http://www.telegraph.co.uk/news/uknews/1924962/Thousands-of-elderly-abused-in-care-homes.html).

    Sorry to sound so cynical, but empty policy after empty policy tends to have that effect on me.

    • Abuse is an emotive subject but with widely differing views on what actually constitutes abuse requiring state intervention- always rather subjective and prone to prejudiced judgement. The use of uncorroborated statistics about abuse are just what is expected of those who fear for their jobs in adult care. Pray where does this 1 million figure come from, as your linked article gives nothing like this figure.

      The truth is that those tasked with safeguarding work have failed the vulnerable repeatedly and especially those in institutions- state or private -against ongoing neglect and abuse by paid staff. Instead they have pedalled the ‘popular’ notion that family / friend carers are the principle abusers.

      The statistics on adult alerts is starting to show that this may be a lessor area, but suspicions and gut feelings are the bread and butter of social work and sometimes a wasted resource focus on the relatively trivial, (I have sent an example to the DoH from a safeguarding annual report).

      Let the vulnerable decide whether they are harmed / abused, then do something about it, effectively, or act when their is clear evidence of abuse, not otherwise. .

      In the meantime please stop peddling theories about abuse as my experience suggests at times those undertaking safeguarding work are no less abusing of their powers and harm the vulnerable in the process.

      • Dear Edna, thank you for your response. the estimate given is drawn from the House of Commons Select Committee Report on Elder Abuse published in 2004. Personally I consider their estimate of 500,000 older people subjected to abuse each year as a possible underestimate as at that time the scale of abuse older people experience in hospital and residential care was not fully acknowledged. I agree abuse is an emotive subject, and it can occur anywhere, sometimes it is unintentional, sometimes a criminal act, and offenders can range from the institutions in society supposed to provide care, carers and professionals to family, friends or strangers. Regardless of who and where it happens the abuse of the elderly, and the failure of the system to address this issue, has been ignored by successive governments over many years, which I find extremely sad.

        I agree with many of your comments, and can only say I am sorry so many older people have been let down by professionals, however, I meet on a daily basis social workers who care deeply about this issue, who do challenge poor care provision and receive very little support from government and wider society. In terms of ‘peddling theories’, we will have to agree to differ, all I can say is I am committed to trying to improve the experience of ageing in the UK for older people, and that whilst nobody wants to read or believe up to half a million older people are mistreated in the UK each year, I believe it to be true and because I believe this I have a responsibility to try and do something about it.

        Thanks again for your comments. It’s nice to know someone is reading.

  2. I also applaud this campaign (I say also – I’m acutely aware that I may actually be stood here clapping by myself!) and the general feeling seems to be one of optimism judging by the response of people to sign up to the campaign. I do agree with you though and wonder how such a campaign can be as successful as intended without serious money underpinning the professional services that deal with dementia day in and day out. It does give the impression that dementia is at the forefront of government agenda and whilst it may be in front of us in the form of advertising campaigns, it needs to also be at the forefront of budget meetings as well.

    That said, I’ve signed up because I want it to be embraced in our community in rural Dorset where people are often isolated with no support networks.

  3. Digalpin , I am concerned with facts, not belief systems.

    Action on Elder Abuse, rightly raised the profile of this issue, but from then on has been part of the ‘vested interests’ safeguarding industry (it gets public funds) bandying figures without hard evidence, extrapolating figures from its callers etc. which can be misleading. I have not found it willing to challenge local authority’s own bad work in safeguarding.

    If you look at the NHS statistics on safeguarding alerts (about 100,000) you will find that a very significant proportion are either unsubstantiated or undetermined. It is easy to ‘witch hunt’ people wrongly suspected or against whom false allegations are made, because people are asked to report anything on a mere suspicion of ?what.

    But those at the receiving end of an ‘investigation’ never recover fully from the bullying behaviour of the social services investigators. Some end up with police records because of poor information gathering by social services staff. You should ask yourself how you might feel if a wrong allegation was made against you and social workers, as it the norm, started and perpetuated a fabricated witch hunt refusing to believe the allegation was false or someone was innocent although they could not substantiate abuse. This is a feature of much modern social work practise- based on theories.

    Pit this against the repeated ongoing failure to protect those in institutions who were clearly being neglected and abused- in signifcant number. Social workers ought to go around looking at elderly hospital wards / care homes and talking to families raising concerns. A look at Alzheimer’s Blog – Talking Point paints a worrying picture when informal carers raise issues- cover ups are reported.

    Somehow the whole of safeguarding work is a cruel joke- I do not blame government on this, they are not the front-line.

    I hope that there will be people willing to volunteer, but in the age when safeguarding means suspicions can be raised against you falsely and people know that false police records means a negative CRB and job risk – I do not hold breath that this venture will take off. Fostering and Adoption is seeing this issue crop up too- so fewer people coming forward. I would no longer think about volunteering in the UK, the false belief that safeguarding is robust is just not the case, with too many people against whom alerts are raised wrongly.

  4. I hope that this measure does go some way to helping those with dementia. I worked for a brief period as a healthcare assistant on a general medical ward of a hospital, and I wished the whole time I was there that someone was able to give me specific training on working with people with dementia. I found it incredibly hard, didn’t know what to do and ended up so anxious about accidentally hurting or failing to serve properly someone that I ended up with my own bipolar disorder resurfacing and I had to leave. I wish I hadn’t had to – but although I asked for training and support to help me deal with what had become a paralysing issue for me, the hospital were unable to provide it unless I trained to be a nurse.

  5. This is a welcome development in recognising dementia sufferers but I can imagine people asking at the training what do I do? It is all very well to recognise it but people also need to know what to do, say, think, feel and what they can expect. This big society approach is an attempt I fear to break down stigma, nothing more nothing less so let’s be honest about that at least. People who are lucky enough(?) to get an early diagnosis are likely to be left without any support for about 6 years until things get really bad and they end up with what my favourite Author Terry Pratchett calls Clapham Junction Syndrome ( http://lancashirecarelibraryblog.com/2010/08/17/sir-terry-pratchett-dementia-diagnosing-clapham-junction-syndrome/), not knowing which way to turn for help and in crisis. How is that going to help people?

  6. I think this is a fantastic and welcoming project from Mr Cameron on early diagnosis with dementia, However I have recently completed my HNC in Social Care and worked with dementia patients for past year before going to university. I like to say has Mr cameron thought about how he is going to vet dementia buddies and safe guard our dementia suffers from abuse will they be going through a PVG Scheme? .or through the SSSC registration process somehow i think not !!!!! Its easy to say that trainging would prevent abuse on dementia patients, but i have worked with dementia patients i have seen how they get very frustrated at themselves and others when they start to forget , it saddness me deaply but sometimes through frustration can be violence, how are these dementia buddies going to be prepared for this when in my training course there was no peperation at all. The only experience i got in how to deal with the situation was within the care home itself . I agree deaply with your statment ” 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. why dont the goverment raise more money and pay more to the carers who have experience in this field of expertise.

  7. My take on Dementia Friends is very close to yours – and Absolutely agree on the need for this to be accompanied by proper post-diagnostic support.

    We can have the most dementia-freindly communities in the world, but if newly diagnosed people are unable to see past the death/decline/decay/disaster/disintegration model of dementia then they are unlikely to want to get out of bed to take advantage of it.

    We have a dementia strategy called “Living Well with dementia” – all good stuff but you will struggle to find much about “living well”

    No-one is denying the sadness and loss that dementia can bring to people’s lives, as the scars on my back continually remind me.

    BUT – we must find another narrative about dementia if “Living Well” is to move beyond the rhetorical and aspirational.

    AND this must be reflected in the training provided for dementia friends because if not, then there is potential to make things a whole lot worse.

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