Older Mind Matters

Dementia care: Visions, bread and responsibility

I heard of a dementia service which recently undertook a visioning exercise. I wonder what the carers and patients using that service would think if they knew that?

I can’t help but think that a “vision” is all well and good, but what we need more of is bread now, rather than fancy cake in an uncertain future, after goodness knows how many government initiatives. In various contexts I meet carers and people with dementia who tell me how they struggle to get any practical help, support or advice at the moment. I met a woman living with early Alzheimer’s disease who told me that she went recently to her local memory clinic and they discharged her. “How does that make sense”, she asked me, “isn’t this a progressive condition?” No it doesn't make sense to me either. This is brain disease. It is progressive. It will eventually have impacts on all aspects of a person’s life. It will impact on the lives of their families. Yet we make the diagnosis, maybe start an anti-alzheimer drug, and send them on their way (and that’s if they have Alzheimer’s disease, if you have vascular dementia you don't even get that). Humane? Sensitive? Person-centred?

It might appear to be saving money but I doubt that helping people live well, supporting their families, and preventing crises is taken into account (and yes, I mean financial account in this context).

The recent Alzheimer’s Society Annual Report, Dementia 2015: Aiming higher to transform lives, includes some sobering facts from a poll of GPs, paraphrased here:
• Half of GPs don’t think people with dementia get enough support from the NHS, and around two-thirds don’t think they get enough support from social services.
• Over three-quarters of GPs think their patients with dementia have to rely on family members as a consequence of the lack of support from health and social services.
Read the report here.

I think we need a responsibility exercise. Who is responsible for what? What can health services do? What can social services do? What can families do and who can help them do it? What can people living with dementia do in order to live well with the condition for as long as possible and at the end of their lives to die well? Who will commit themselves to walk the path into an unknown future with this person and their family when they most need someone beside them?

 

Note: Antonio Machado in a poignant and powerful poem writes “Traveller, there is no path
 The path is made by walking.” Read it here.

 

 


3 comments (Add your own)

1. Dave Jolley wrote:
The bread of life
Sorry to be slow in responding – I love the poem and will use it over and again. No-one wants to be led down the garden path. We all prefer our own unique way through. Most of us buy clothes which come from chain stores, though some will still knit or tailor their own or know someone who will do this for them, but the combination we choose to wear and when to change are ours to decide. So much for the requirement of ‘good practice’ to impose predefined ‘pathways’. Good clinical care is bespoke, flexible and humble
The thing that has held me up is the 84 page Alzheimer’s Society report. I am never sure about their methodology (Appendix 2 p 68): 500 self-selecting people who are known to the Society one way or another. The summary statistics do suggest a fair collection across the age range but I am not sure of the gender mix, nor ethnicity, nor the geography. 68% of the sample declared themselves living well with dementia – compare that with only 40% in a sample of older people in the general population quoted by Jessica Allen http://www.ippr.org/files/images/media/files/publication/2011/05/older_people_and_wellbeing_1651.pdf?noredirect=1 (Table 1.2).
So maybe things are not so bad after all – but that is not the summary message from the report – how could it be!
People with or without dementia generally make the best of their circumstances and are happiest to be in their own place with their own people (friends, neighbours or relatives, local doctor, shopkeepers, park keeper, dog, cat etc). Additional help is often accepted with reluctance and only when it is really necessary and other approaches have begun to fail.
So I know what you mean about visions – Whose vision?
It can be that the professionals carry a caricature of what the standard issue older person with dementia is like and will like or need. But it may not be my vision from within life with dementia and six other pathologies and pills to match them and worries about my daughter, a dripping tap and a television with a dud remote.
No – I know what you mean about visions and bread – bread is so good – the stuff of life. You won’t go far on cake or icing alone – but bread and butter with a choice of fillings – That’ll see us through for most days – with a cuppa.
I know exactly what you mean. What the ######## is going on? What basic services are there available and how do we access them from the frontline and in combinations to match the needs of each individual as we meet them? When we know that we can make something which might not be perfect but it will do for now.
Then we can take time to dream https://www.youtube.com/watch?v=fOnv8lXDzhg

Mon, July 20, 2015 @ 1:01 PM

2. Sean Lennon wrote:
Dave has just brought your blog to my attention. thank you for another thoughtful message.
I've been involved in some "visioning" recently and I think it is a good thing to do. Maybe "visioning exercise" reeks of jargon but I think you know what we mean. We do this because we have to make sense of our present service and develop an idea of what we can provide in future. To do this we have to appraise ourselves of how well we are doing at the moment in providing a service for people with dementia and their families. We try to see the gaps and the strengths and also ask those who use our services and those who work in them about what is going well and what should be improved. We also have to look at the consequences of the reduced NHS and local authority resources and then to try to make some proposals for how we can reshape what remains.
I think that if we can develop and direct what we do to be responsive to individuals and their families, to collaborate with those who use the service and our partners in primary care, community and local authority services, and groups such Alzheimer's society then that would be a good vision.
I agree that this shouldn't be bound by pathways and I hope that the outcome of our visioning will be good clinical care.

Mon, July 20, 2015 @ 5:22 PM

3. Mike Clark wrote:
Thanks for this Susan, and David for sending me the link. Visions and pathways are only words, but I sometimes feel they have become debased words - used to block sensible action and not assist it.

In many sectors, and David uses the comparison of clothing, we see how standard items can be made to consistently high standards and offer VFM, but that allow people to choose the specific mixture of items and timing that suits them.

Pathways can offer clarity and security to help people see the routes and options available to them, and to make their own choices - along with other devices like maps. There is, I believe, even an architectural idea of letting pedestrians define the pathways - watching where they walk and building the paths there. We can mould these words in to the right ways of thinking and acting, if there is still time.

It's only words, and words are all I have . . . . . . . . .

Wed, July 22, 2015 @ 2:10 PM

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