Tool measures quality of life in patients with dementia

Researchers from the University of Queensland have devised a new tool to measure quality of life in people with dementia — assessing five key domains: physical health, mood, memory, living situation and ability to do fun activities.

Importantly, the tool takes into account the views of people with dementia and is hoped to result in better targeted care for those living with the condition. A paper reporting on the valuation of quality-of-life states in the Alzheimer’s Disease Five Dimensions (AD-5D) instrument is published in the journal PharmacoEconomics.

Associate Professor Tracy Comans said the tool revealed that physical health was considered the most important contributor to quality of life, followed by a person’s living situation.

“We found the priorities of people with dementia and their caregivers differed from the general population, with their living situation and the ability to do fun things being valued as the most important contributors to quality of life,” Associate Professor Tracy Comans said.

“However, people with dementia, their caregivers and the general population all valued memory as least important to good quality of life.”

Dr Comans said nearly 2000 people in the general population completed an online survey, while people with dementia and their caregivers were interviewed in person.

“The views of those with dementia were given priority as we developed the tool,” she said.

“The five domains were validated by three focus groups, confirming activities that impact the quality of life for people with dementia could be mapped to one of the domains.

“Study participants individually rated each of the key domains before adding them together to gain a total quality of life score.”

Researchers said the tool could now be used to ensure the perspectives of people with dementia and their caregivers are included when considering interventions for improving quality of life.

Dr Comans said this was a more equitable method than relying solely on the perspective of a proxy.

“Both caregivers and people with dementia were very willing to share their stories and experiences with us, which provided valuable insights into what it’s like to live with dementia.

“These personal stories reaffirm the value of involving people with dementia and their caregivers in research that relates to their quality of life.”

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