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:
- Meaningful activity/occupation for a person with dementia, including opportunities to get out into their local community, understanding of their hobbies/interests/life story and any education they might want to undertake to learn a new skill/hobby, plus peer support as appropriate.
- A focus on independence and how to help the person to maintain this.
- Spiritual/cultural/emotional care – This should go beyond just detailing a person’s religion (if they have one).
- An onus to see an individual not as a set of 'behaviours' but as a person with symptoms that can be alleviated by person-centred care, non-drug therapies and good dementia care practices.
- Rehabilitation / reablement techniques that could be suitable for this individual - focusing on what the person can do or could be helped to achieve (see my blog on reablement here).
- An exercise plan, including physio/OT as required.
- An overview of nutrition and hydration that details what the person loves to eat/drink, things they might like to make themselves, new foods/drinks they might like to try. This should go way beyond, “They like 2 sugars in their tea!”
- An assessment of the environmental needs the person feels they have – for example, do they need help with orientation in day/time/place, signage, pictorial help with finding household items etc?
- A communications plan that looks at a person's abilities and how to maximise these rather than any deficiencies they may have communicating.
- For the healthcare aspects of the care plan, a holistic view of the person should be documented with their help to include an understanding of any other long-term conditions they have, plus other health needs/preferences, for example: dentistry, podiatry, optometry, continence care, dietician, speech and language therapy, physio, OT etc.
- A requirement for regular reviews of medication to guard against poly pharmacy and use of any unnecessary medications.
- Advanced care planning/End of life wishes.
Once all that has been documented (and hopefully accompanied by a photo or two to help further personalise the plan), who should own this care plan? For many years, care plans have been owned and fiercely guarded by health and social care professionals (who would invariably each make their own plans and not share them!). Which for me begs the question, why can’t the person own their care plan?
The comparison between how we treat older people with dementia, and younger women who are pregnant is stark here. In maternity services, women are given their 'handheld' notes that they take to every appointment and that detail all of their medical and personal details and preferences, including giving the woman a glossary to reference all the technical terminology against.
This would be a fantastic model to empower people with dementia. Eventually, it can only be hoped that health and care will become more integrated and fully digitalised – and granted some areas of England are making progress here - but overall, why can’t the people who have had to give up their personal and intimate details to documentation own that documentation? I think professionals often underestimate how much a person’s privacy is invaded by the care planning process, and so I firmly believe that if a person is willing and able to retain their own care plan they should have that opportunity, something that, right now, isn’t universally available for every person diagnosed with dementia.
Until next time...
Until next time...
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