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.

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

Rethinking Personal Budgets in Social Care

Reading Community Care, I saw that NLGN (New Local Government Network) have published a report stating that the ‘rush towards personal budgets’ must be slowed down.

I’ve tried unsuccessfully to find this report on the NLGN website but haven’t been able to do so am reliant on the third party reports from Community Care but I thought it raised a number of issues that are worth pondering.

The author of the report, Daria Kutsnetsova says in the article

.. in a lot of cases, personal budgets do not mean choice and control for service users because people are not given the choice of direct payments. Their budgets are handled by a care manager, which can be a choice in the personal budgets system, but in many cases it is not a choice and people are receiving the same care they were always receiving, she said.

It’s just called a ‘personal budget’ to push this government target,” she added.  (my emphasis)

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