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Dementia patients, caregivers want funding for support more than a cure

Funding for developing and implementing person-centered care approaches for Alzheimer’s and other dementias is more important to patients with dementia and their caregivers, compared with funding for cure research, according to recently published data.

“Sure, most people in our surveys would love for there to be a cure, but in the meantime they all have this disease and they need help. We have 10 times more money going toward research instead of supporting the people who are living with dementia. Research is still high on the agenda, but they think that support is more important,” Davina Porock, PhD, RN, said in a press release.

Davina Porock, PhD, RN

Porock and colleagues conducted a nationwide Delphi survey to assess how individuals with dementia and their care providers would prefer funds from the National Alzheimer’s Project Act (NAPA) to be allocated.

Results demonstrated that funding to support caregivers and resources for providing long-term care ranked first and second, respectively, as being most important to participants. Research for cure and care ranked third overall, followed by person-centered education and training and lastly, advocacy and awareness to reduce stigma of dementia.

These results were in contrast to how funds are currently allocated by the government, with the top priority being funding for cure, prevention and treatment of Alzheimer’s and dementia, according to the survey.

Participants also indicated that training for both professional and family caregivers on how to provide person-centered care should be a top priority for NAPA funding. Additionally, participants felt as though funding that does go toward research should not solely be centered on finding a cure; they felt as though funding research efforts was equally important.

Emphasis on these ideas was seen among many participants, with one individual stating,

“I have known for a long time that there will be no cures in my lifetime. Maybe in my children’s, not sure now, not even sure if in my grandchildren’s. So there has to be some more emphasis/support/help for caregivers, and some way has to be found to pay for care in home. Facilities in my area are costing $10,000 per month. No way is this affordable.”

Porock and colleagues hope that the results from this study will bring attention to policymakers, and NAPA priorities will be reallocated to better serve the needs of patients and caregivers.

The researchers noted that nurses and other health care professionals are in a position to make person-centered care approaches possible on a daily basis since they are the ones who come in contact with patients and caregivers most often.

“Nurses and other health professionals are well positioned to take action as individuals on a daily basis and as a professional group in order to initiate many of these priorities. … Advocacy and education regarding the need for greater consideration of the priorities of persons with dementia rest squarely within our profession, and are essential to improving the quality of life for individuals and families,” Porock and colleagues wrote. – by Casey Hower

Disclosures:  Healio.com/Family Medicine was unable to confirm relevant financial disclosures at the time of publication.