When Shoko’s Alzheimer's became worse, what kept us going were the love and practical help of family and friends, and the remarkable friendship and support of the carers who visited us. Without them we would have been finished.
But it’s demanding to be a carer. They need support too. The National Institute for Clinical Excellence (NICE) states that each person living with dementia should have ‘a single named health or social care professional who is responsible for coordinating their care’. And the carers also need support that is ‘designed to help them support people living with dementia’ (https://pathways.nice.org.uk/pathways/dementia).
Who will give that support? I believe the priority must be for the ‘professionals’, wherever possible, to provide a dedicated team to give personally focused support to the caregiver(s), as well as to the person living with dementia.
The challenge is how to make this work. It cuts across existing structures and ways of working.
We were fortunate to have the Community Dementia Care team run by the Central London Community Healthcare NHS Trust (CLCH), based within Merton Community Services. It was an attempt to bring together medical and social care. It was brilliant – personal, accessible and professional support for people living with dementia and their carers. But it was struggling all the time and hoping to avoid having its budget cut, when it needed to be expanded at least ten times to meet the need.
Later we heard of other teams like this. They surely must be the future of care for the elderly, not just for those with dementia, but especially for them.
More about this in Living with Alzheimer's – a love story
Published in January 2020 by Instant Apostle; ISBN 9781912726196. Available here to order online.
Or you can request it from your local bookshop.
‘…written with such compassion, understanding, emotional intelligence and practical advice.’
Kim Smith, Dementia & End of Life Care Clinical lead, (Merton) Central London Community Healthcare NHS Trust
‘Really thoughtful and honest account of how it is to live with dementia. What comes through strongly is the need for appropriate support at the right time.’
Margaret Dangoor, trustee of the Centre for Ageing Better, Carers UK and Crossroads (Richmond and Kingston upon Thames), active in the dementia and carer community
‘I faced many of the challenges described here in my own life and can identify with so much in this honest, vivid and very personal account.’
Margaret Gould, former caregiver and advocate for those living with dementia