UK Survey Seeks Input from Dementia Patient Caregivers

Parkinson’s UK has opened a survey aimed at understanding the experiences of caregivers of people who have Lewy body dementia or Parkinson’s disease dementia.

The survey seeks to shed light on the support caregivers receive, and caregivers’ and patients’ experiences with the health and social care system in the United Kingdom.

The deadline for survey responses is June 11. Results will be used to develop solutions for caregiver and patient challenges and to help the nonprofit organization increase its support. The U.K. government is reportedly considering reform of health and social care, so the survey is a way for caregivers to have their voices heard.

“Caring for someone with Parkinson’s and dementia can be a very lonely place,” said Barbara Deering, who cared for her husband who had Parkinson’s dementia, in a press release.

“If I had known what to expect and how to deal with it, it would have made my life so much easier. I am sure I could have looked after my lovely husband for longer at home if I had the support I needed. Please help Parkinson’s UK understand what matters to you by filling in this survey. They need to hear your views of your experiences to help change attitudes and improve support,” Deering said.

Cognitive impairment is a common non-motor Parkinson’s symptom, and causes significant disability to patients and burdens for caregivers. Cognitive changes, which are quite variable, can range from mild cognitive impairment to Parkinson’s disease dementia. The latter affects multiple areas of cognition and is severe enough to impair social or employment functions.

Lewy body dementia is a neurodegenerative disorder characterized by toxic protein clumps, known as Lewy bodies, inside brain cells. Because some of the same genes that are involved with the onset and development of Lewy body dementia are also associated with Parkinson’s and Alzheimer’s, there are possible ties among the three disorders.

The survey takes between 15–30 minutes to complete and covers topics including caregiver support, caregiver challenges, the diagnosis process, the quality of health and social care, and how caregiving support and information is accessed. If they wish, respondents may remain anonymous.

“It is important that we understand the particular challenges you face in getting the support you need, and the care and treatment the person you care for also needs,” Parkinson’s UK states on its webpage introducing the survey. “We want to know what is important for you, so together we can influence changes to health and care services.”

For more information about the survey, email Sam Freeman Carney at [email protected].