Person-centered approaches to care were a clear theme in many of the responses. Most participants desired the person and family living with dementia, and not the disease, to be the center of care, policy and research.
Dementia is an irreversible condition that slowly impairs memory and cognitive skills, and eventually a person's ability to carry out daily activities. People with dementia often need assistance eating, bathing and dressing, and sometimes have difficulties communicating.
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Alzheimer's disease makes up nearly half of all dementia cases, and symptoms typically first appear after age 65.
"It's a taxing job to take care of someone with dementia," says Porock. "Families, as much as they love each other, can find these tasks physically and emotionally difficult to do. And when the caregiver is a spouse who is close in age, it's not unheard of for them to die first."
Another common issue involves caregivers putting their careers on hold to support an ailing family member and having difficulty returning to the workforce, says Porock.
Increased funding for families living with dementia could improve their ability to afford nursing support in their home or at an assisted living home.
"Dementia is a major, and increasing, issue in the world because we have more and more people living longer. And one of the consequences of us not dying from heart disease, cancer or other organ failures is that we live long enough for our brains to wear out," says Porock.
Porock hopes the results lead policymakers and the NAPA advisory council to reconsider the priorities for funding to better address the needs of those living with dementia and those who care for them.
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Additional researchers on the study include Louanne Bakk, PhD, assistant professor in the UB School of Social Work and director of the Institute on Innovative Aging Policy and Practice; Suzanne Sullivan, a doctoral candidate in the School of Nursing; Karen Love, founder of the Consumer Consortium on Assisted Living (CCAL); Jackie Pinkowitz, CCAL board chair; and Sonya Barsness, of Sonya Barsness Consulting.
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