Carole White, PhD
UT Health San Antonio

Alzheimer’s disease and related dementias are irreversible conditions for which there are currently no curative treatments. As dementia progresses, families take on increasing levels of care to support their family member living with dementia. In leading an integrated research service program for families impacted by dementia, I have seen the impact of dementia on families. Despite their first-hand knowledge, families impacted by dementia, in particular persons living with dementia, have not often been included as stakeholders in setting a research agenda. Through my interactions with families, including facilitating a support group for persons in early to mid-stages of dementia, I knew both families and people living with dementia were interested and capable of bringing their unique perspectives to discussions about dementia care and the priorities for research in this area.

With funding from the Patient-Centered Outcomes Research Institute, we organized a stakeholder council that included persons living with dementia, family caregivers, other community members, clinicians, and researchers. Over a series of monthly meetings, the council discussed what they perceived as most important in their current situations, gaps in care, and what they thought needed to be improved. Based on these discussions among council members and their networks, the council developed a survey of research topics. This survey was then distributed to a wider community of stakeholders to select priority topics for research. The survey was constructed in a dementia-friendly manner to ensure accessibility to people living with dementia.

The survey was completed by 186 people, with almost two-thirds identifying as family caregivers or people living with dementia. We examined the topics by stakeholder group. The following priority research topics were identified:

  • Interventions that support families at the time of diagnosis
  • Interventions to support people living with dementia to stay in their homes
  • The need for effective approaches to manage behavioral symptoms associated with dementia and interventions to slow cognitive decline
  • The need for better communication between families and healthcare professionals

This research underscores the importance of hearing from the wide range of dementia stakeholders who bring their expertise and different perspectives to build the science of dementia-specific supportive care. It was important to us that the survey was inclusive of all relevant stakeholders. Despite the stigma and the misconceptions about dementia, with support, people living with dementia were able to make meaningful contributions to the data. Our findings are consistent with other research conducted in Canada and the United Kingdom, which has conducted surveys to identify dementia priorities for research, although our focus was specifically on dementia care. Our findings are meant to inform those who conduct research and those who fund research about research topics stakeholders believe are most important, and thus have the potential to improve the quality of life among families impacted by dementia.

There are currently over 50 million people worldwide with a diagnosis of dementia, with growing numbers related to the aging of our populations. Latinos are at an increased risk for dementia, yet make up a small percentage of participants in clinical research. Our team has received funding to specifically focus on building capacity for patient-centered research among Latinos so that research is focused on what is important to them and the findings that apply to them.

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

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