I see a lot of dementia statistics in my work, but none have shocked me more than that which Alzheimer’s Disease International (ADI) published on 21 September 2022 as they launched their 2022 World Alzheimer’s Report. ADI said:
“Up to 85% of people living with dementia may not receive post-diagnosis care.”
Admittedly that statistic is the global picture of post-diagnosis support, and it’s well known that dementia isn’t even recognised as a health condition in some countries, but I still find it staggering that only 15% of the world’s population have had the support they needed following their diagnosis of dementia.
As Paola Barbarino, Alzheimer’s Disease International CEO, said in the ADI Press Release for the launch of their report:
“We don’t question whether people with cancer need treatment, so why is it that when people receive a dementia diagnosis, they’re often not offered treatment or care? Repeatedly, they’re just told to get their end-of-life affairs in order.”
That quote bears a haunting reminder of the Prescribed Disengagement™ that my friend Kate Swaffer has campaigned about for years. Kate trademarked this term to describe how, after a diagnosis of dementia, people are told – in Kate’s words – to:
“Go home, give up work, in my case, give up study, and put all the planning in place for their demise such as their wills.”
I say it AGAIN: Post-diagnosis support is vital
Paola Barbarino makes an important point when she says:
“While dementia doesn’t yet have a disease-modifying ‘cure’, there is clear evidence that demonstrates that appropriate post-diagnosis treatment, care and support significantly improves the quality of lives of those living with this disease, allowing many to maintain independence for longer.”
Paola’s words echo two themes of my World Alzheimer’s Month work this year that I think are especially important in post-diagnostic support. Supporting independence and life story work (that is heavily linked to providing appropriate support and improving quality of life).
No one wants to just exist. Everyone needs and wants to be able to have as much independence as possible, and a dementia diagnosis shouldn’t change that (although it’s a label that often brings with it people doing things for a person rather than with them)
Independence will vary hugely from person-to-person and be heavily influenced by the person’s abilities, but we need to identify and support all expressions of independence, no matter how small they are. We need to recognise too that living with dementia often means fluctuating abilities. We should never assume that because someone can’t do something right now, they won’t be able to do it later, tomorrow or at any other point in the future.
I’ve had so many conversations in the last few months with care providers (from homecare to care homes) who are realising they aren’t supporting the independence of the people who access their services as well as they could be. It’s often a trap that family carers unintentionally fall into too. Ultimately, it’s often easier, quicker or deemed to be safer to do things for a person with dementia than the person doing things for themselves or having side-by-side support.
A lot of my thinking about this topic was summed up in the blog I wrote for MacIntyre this month about independence. Whilst it’s focused primarily on people with a learning disability and dementia, there is a lot of learning for everyone interested in helping a person (with or without dementia) to preserve and enjoy living an independent life as they get older and/or live with health challenges.
Life story work
Along with my huge passion for making environmental modifications (to support living well with dementia – Read my advice in these two blogs ‘Home sweet home’ and ‘Resolve to be a dementia environment champion’), and my love of music to support a person with dementia (as documented in my blog, ‘Singing from the same hymn sheet’), the other aspect of support that I champion over and over again is life story work.
It’s applicable to all people of all ages, but really comes into its own in dementia care and support. Knowing everything you can about a person is the foundation of providing person-centred care. It helps to inform every interaction you have. It aids communication. It helps you to implement strategies to reduce distress. Without this knowledge professionals are working in the dark, and that is a very negative experience both for the person with dementia and those supporting them.
One of the best recent examples I’ve seen of life story work (and the lovely story of its creation) has been documented by me in another blog I’ve written for MacIntyre: ‘Barry’s brilliant book – Life story work in action’. I hope it will inspire anyone supporting a person with dementia to give life story work a chance. It really is a game-changer.
Helping you navigate post-diagnosis support
Post-diagnosis support is something I’ve been passionate about throughout my years of campaigning for people with dementia and their families. I’ve written about it extensively, and the following blogs provide some useful information and links about this topic:
’10 years of D4Dementia… and 10 years for my dad’s dementia diagnosis’ (This blog includes a ‘Hope for the Future’ section with links to some key sources of support).
‘The failure of post-diagnosis support’ (This blog looks at what happens when support fails and how we remedy that).
‘Delivering a dementia diagnosis’ (This blog looks at diagnosis and immediately afterwards).
As Paola Barbarino says:
“It greatly improves the quality of life for a person with dementia if they have clear access to health resources, care, information, advice, support, and importantly life adaptations and adjustments.”
Although I’m not a formal ‘Navigator’ – a role Alzheimer’s Disease International are advocating for all people who are diagnosed with dementia – my aim has always been that D4Dementia would be a source of support for anyone diagnosed with dementia, their family members, friends and health and care professionals. I hope within my 270+ posts there is something to help everyone to be closer to the 15% than the 85%.
Until next time…