Let’s talk: Identifying support required for people with Lewy body dementia

Research project: Living with the physical (autonomic) symptoms of Lewy body dementia: research to explore the experiences and views of patients and family members.

Lead investigator:  Alison Bentley
Institution: Cambridgeshire and Peterborough NHS Foundation Trust
Grant type: Dissemination
Duration: 17 days
Amount: £2,389

What do we already know?

Lewy body dementia is a common neurodegenerative disease which includes two related disorders: dementia with Lewy bodies and Parkinson’s disease dementia. Lewy body dementia can have a significant impact on a person's autonomic (involuntary) nervous system. This system regulates the involuntary actions of many bodily functions such as bladder and bowel function and temperature; the condition can also affect heart function in a way that can lead to dizziness, falls and fainting. 

Lewy body dementia is a progressive condition, meaning that over time symptoms increase and get worse. Eventually a person with Lewy body dementia is likely to need a large amount of nursing care. If the person is able to manage their symptoms it will help them to live well. 

Interviews with people with Lewy body dementia and their carers were conducted over a six month period. From the responses the researchers identified that some of the changes were difficult to manage and distressing, both for the person living with Lewy body dementia and their carer. Support for bowel and bladder symptoms was found to be an area that was lacking.

What does this project involve?

Using these findings the researchers aim to increase awareness that people with Lewy body dementia have these bladder and bowel symptoms as a significant and distressing part of their dementia. This will help people struggling with bladder and bowel control to access support, and open conversations among health professionals and carers, as well as within the wider population.

The researchers developed a series of workshops for health care professionals raising awareness of the findings. They will present their findings to an audience of health professionals, members of the public and researchers at a national meeting, and produce a video and leaflet to promote the research findings.  

How will this benefit people with dementia?

If mismanaged or not addressed the symptoms of dementia can be distressing to the person as well as loved ones and carers. If appropriate support is in place it may result in the person with dementia or their carers feeling more confident to continue with daily life activities outside of the care environment. Raising awareness of areas in the care network that require increased attention or resources is important to provide a better environment for people living with dementia.

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