Dementia Patients and Caregivers Prefer Better Support over Clinical Research

By David Hart, Ph.D.

A new study that surveyed people living with dementia and their caregivers revealed that the majority of respondents ranked caregiving support and resources for long-term care as higher on the list of priorities than clinical research. The study, led by University of Buffalo researcher Davina Porock and published in the Journal of Gerontological Nursing, presented findings in contrast to current funding parameters determined by the National Alzheimer’s Project Act (NAPA), a federal plan to overcome the disease. NAPA invests only $10 million of their $100 million dollar budget in caregiver support programs, the remaining $90 million is designated for medical research and clinical trials. While many respondents reported maintaining hope for a cure to be found, their primary need was clearly respite care and education.

The nationwide survey recorded nearly 700 responses, drawing respondents from more than 25 Alzheimer’s disease advocacy and patient groups. Participants were asked to rank funding priorities based on 11 themes that included care setting, quality of life, and advocacy and awareness. Analysis of the data contributed to the emergence of five top priorities:

  1. Financial resources for respite care and short-term caregiving support – care that typically lasts less than a week and is used to relieve family and daily care providers.
  2. Financial resources for long-term care support and aging in place, which included assistance with in-home care and assisted living expenses.
  3. Research for a cure and medication
  4. Education and training for families, health professionals, and volunteers
  5. Advocacy and awareness to reduce the stigma of dementia

Respondents also preferred that areas of research, rather than focus solely on finding a cure, also attend to education and training, impact on quality of life and the family, and alternative therapies and treatments. Person-centered approaches to care were an evident theme in many of the responses. Many of the participants desired the person and family living with dementia, and not the disease, to be the center of care, policy, and research.

Always Best Care – South Bay is proud to be on the forefront of dementia care in our community. Several of our programs and services match the descriptions of priorities described by the majority of the participants cited in the study. Our person-centered approach to dementia care is evidenced in our empirically supported training model we call Memory Care Tools, by which every staff member, care manager, and caregiver is trained. Our intensive Care Management services help families navigate the challenges associated with dementia care and often connect clients and their families to additional support programs that frequently improve quality of life. We offer free caregiver support groups affiliated with Alzheimer’s Greater Los Angeles and a monthly workshop for family caregivers interested is learning how to manage challenging behaviors often associated with moderate stage dementia. And of course, our award-winning Concierge Home Care, which has been voted the best senior in-home care in the South Bay three times in the last six years. Until there is a cure, Always Best Care-South Bay is committed to supporting people living with dementia and their families right here in our community.

For more information on any of our programs and services, please visit our website at or call and speak with a team member at (310) 792-8666.