The Long & Winding Road
There isn’t one film title or phrase that can sum up the experience of living with, and dying from, dementia. The recent Alzheimer’s Society film ‘The Long Goodbye’, made in consultation with people affected by dementia, is thought-provoking and chooses to emphasise the many losses that this progressive condition brings.
One can’t deny that the changes and the losses are many and that some families find dementia absolutely awful and miserable – to live with and to bear witness to. But that’s not the whole story and it’s not everyone’s experience. Thankfully, there can be happy times and treasured moments of closeness, gratitude and joy. Some carers are genuinely grateful for the opportunity to make the choice to care for a loved one, just as others aren’t.
A concept I find useful is ‘personhood’ and, in relation to people living with dementia, it’s defined as:
“A standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.”
If we all try to uphold someone’s personhood, then we won’t speak of them dying multiple times. We will acknowledge that they are changing and that more things are difficult for them – but that they are still themselves. And we will celebrate any signs of who they are and what they mean to us because of our shared memories.
And, as for the people with dementia themselves, they have varied experiences with their dementia. Some people are upbeat, some are appreciative of their family’s support, or of a long life well-lived, while others get anxious, apathetic or depressed.
No-one needs to be, nor should be, without help. All families can get support, advice, and encouragement from other carers. Developing resilience and preparedness is important for carers. Being forewarned of the dementia symptoms that might develop means that you are less likely to be devastated when they occur.
People with dementia deserve to be praised and celebrated every day that they get up and keep going. If they can continue to socialise, stay active and have purpose, then their lives can be happy and meaningful. That’s why Together Dementia Support was set up: to enable people to continue being active citizens, living their remaining lives to the full.
Both carers and people with dementia need to be surrounded by friends, neighbours and professionals who step up to make life the best that it can be. Highlighting the bleakest ‘dementia moments’ in films and in the way we talk about dementia risks perpetuating stigma and fear of loss which makes others back off rather than offering support.
All the staff and volunteers at Together Dementia Support would strongly assert that working alongside people living with dementia is joyful and life-affirming. We believe that’s because we create a positive, inclusive atmosphere where members are constantly celebrated.
Dementia takes us on ‘The Long and Winding Road’, which for us better reflects that the dementia journey is constantly changing and can have surprises, high points and low ones. Let’s invite everyone to walk the road with us and keep talking about how we can all respond together.
Sally Ferris
CEO Together Dementia Support
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