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.

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