FURTHER READING
Our Long Goodbye is just one story, there are so many more about dementia and Alzheimer’s. With one in two people being directly affected by dementia, I wanted to share my story to help connection in this field and reduce the isolation that people with dementia and their carers can feel.
In 2015, I started noticing that Mum was struggling with her memory. In 2016, Mum moved into a care home. Mum got a dementia diagnosis in 2018. She was diagnosed with Alzheimer’s and Vascular Dementia. Dementia is the umbrella term for a group of symptoms that affect cognitive ability, memory, thinking and behaviour. Alzheimer’s and Vascular Dementia are specific types of dementia, Alzheimer’s being the most common. Brain cells are damaged and die leading to a decline in brain function.
“Friends and family of the individual with Alzheimer’s disease can become strangers and in a sense the individual with Alzheimer’s disease becomes a stranger to family and friends.
A study (…) focused on the idea of ‘anticipatory grief’ and mourning the loss of someone before they actually die.”
From ‘Alzheimer’s Disease and ‘the long goodbye’’ by Brad Hundt, University of Pittsburgh, 2014
HERE’S SOME LINKS YOU MAY FIND USEFUL
DEMENTIA UNITED AND DCERG (DEMENTIA CARERS EXPERT REFERENCE GROUP)
Dementia United is Greater Manchester Integrated Care Partnership’s programme for dementia.
DCERG is part of Dementia United made up of a group of people with lived experience of dementia. Members use their experiences and knowledge to help make informed decisions and improve outcomes. They ensure carers voices are represented when feeding back to policy makers.
Jag, Ruth and Leah from DCERG, led by artist Sara Cocker, make up the steering committee for Our Long Goodbye.
dementia-united.org.uk/dementia-carers-expert-reference-group/
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THE CARE LAB
The Care Lab came out of a three-year University of Manchester research project, exploring ‘Care Aesthetics’ funded by the Arts and Health Research Council. Led by Professor James Thompson, The Care Lab aims to bring together arts, health, and social care researchers and practitioners to examine Care Aesthetics – projects of ‘artful care and careful art.’ The Care Lab hosts practical sessions, conversations, and events with a focus on the importance of care in all our lives.
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ALZHEIMER’S SOCIETY
At Alzheimer’s Society we’re working towards a world where dementia no longer devastates lives. We do this by giving help to those living with dementia today and providing hope for the future.
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DEMENTIA UK
We are the specialist dementia nursing charity that is here for the whole family. Our nurses, known as Admiral Nurses, provide free, life-changing support and advice to anyone affected by dementia.
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AGE UK
Age UK is a major charity in the United Kingdom dedicated to helping older people. They provide companionship, advice, and support to older people, particularly those who need it most. Age UK’s work includes advocacy for older people’s rights and challenging inequalities, with a vision of a world where everyone enjoys later life.
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CITIZENS ADVICE BUREAU
Citizens Advice Bureaux are local, independent charities that provide free and confidential advice and support on a wide range of issues, from consumer rights and debt to housing and benefits. They offer practical help, often negotiating with companies or even representing clients in court.
citizensadvicemanchester.org.uk
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