Dementia at the end of life: breaking the barriers to care

On 24 November, Marie Curie hosted a seminar exploring findings from our report Living and Dying with Dementia in Scotland: Barriers to Care

The report found that people with dementia have less access to quality care at the end of their life than people with other terminal illnesses.

It sets out the barriers that prevent people from accessing and receiving high quality care and explores how to improve the care and support for people who are living and dying with dementia in Scotland.

A range of speakers from the public, charity and academic sectors talked about the difficulties in identifying and caring for someone with the complex condition.

Better dementia care

As an unpredictable and widespread illness, there was agreement that providing better dementia care is everyone’s responsibility – from the Scottish Government and integration joint boards to charities and local communities.

Throughout the seminar personalised care was championed as central to ensuring people with dementia continue to live well from the point of diagnosis. Personalised care is important in managing dementia symptoms, as someone who knows the person is best placed to monitor changes in behaviour.

Changes in care environments can be distressing for people with dementia and their families. Marion Randall, Care Homes and Day Services Manager at the City of Edinburgh Council  , explained that providing consistency of care can be a challenge, especially when staff are balancing multiple priorities. Such challenges make the case for better coordination of dementia care even stronger.

Personalised care

Alzheimer Scotland’s Advanced Dementia Practice Model   aims to address and support the complexity of providing dementia care. They propose the need for dementia practice coordinators to manage multi-disciplinary teams. Such a coordinator would ensure each patient has the appropriate care as their condition progresses and maintain the level of personalised care they want.

Playlist for Life   provided a powerful example of the potential benefits of personalised care through creating a digital playlist of tailored music. Playing personal music has been found to help people with dementia reconnect with loved ones and past memories. Such personalised care can challenge perceptions of helplessness that surround dementia.

Tommy Whitelaw, from Dementia Carers Voices  , spoke passionately about the need to talk to people before the end of their lives and to change the narrative from “what's the matter with you?” to “what matters to you?  

Barriers to care

Delegates also repeated the need to recognise dementia as a terminal illness and encourage early conversations with patients, families and carers. Doing so earlier will better prepare families, assist in better coordination of care, and raise awareness of dementia as a terminal illness.

Breaking down the barriers to care that people with dementia approaching the end of their life face is a substantial growing challenge. A more personalised, coordinated approach will ensure people get the help that they need to live and die well with dementia. These approaches must be central to Scotland’s third National Dementia Strategy.

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