At the heart of good post-diagnostic support, indeed really at the very beginning of it following a diagnosis of a form of dementia, is for the person with dementia to create a care plan. My dad had one, in fact technically he had 3, since each of the care homes he went into made up their own care plans using their own paperwork. There was inevitably some overlap of topics, but the detail and quality of the care plans was very much dependent upon the dedication of the staff completing them and the input dad and us as his family were allowed to have.
I say allowed to have quite deliberately, because we weren't always consulted as I wrote about here, and that eventually led to a fatal outcome for my dad. Therefore the first and most fundamental pillar of any care plan, for any person with dementia at any and every stage of their dementia must be the involvement of the person and any carers/family that they have (being mindful of what carers/family can realistically cope with contributing to the implementation of the care plan in the long term). I am of course mindful that not everyone has an actively involved family, and for those people without any significant others particular care and attention needs to be given to how we create care plans with them, utilising all available means of ensuring their preferences and rights are upheld, potentially through the use of an advocate for example.
Which then leaves the crucial question about what should go into a care plan? I've seen some pretty crude models of care planning over the years, the worst of which would detail key personal information, a breakdown of the person's 'inabilities' (immobility/incontinence/swallowing problems), their inputs/outputs (food/fluid intake verses urinate/defaecation), the difficulties they pose to care staff ('challenging behaviour', needing to be fed, incontinence issues etc) and what should be done in the event of their death (choice of funeral etc). This is, I think we could all agree, the very essence of negative care planning.
Care planning using this model misses the vital factors of detailing what a person can do, what they like to do, what they may want to achieve and how they can live well. I'm not against including aspects like advanced care planning, end-of-life wishes etc, but this shouldn't have prominence in a care plan over and above detailing what the person may want in the (potentially extensive) period before they get to the end of their life.
For many years, I think care planning was seen as a mechanism for making the lives of health and social care professionals easier. The plan would instantly flag up what the person they were providing care and support for couldn't do, and what decisions should be made at the end of their life. All fine and good for professionals, but what exactly does the person gets out of this and how does it help them to see a life beyond their diagnosis?
So, what would I like to see reflected in modern care plans? The following, in no particular order, are some suggestions:
Until next time...
Until next time...
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