The next decade’s research agenda for dementia and Alzheimer’s disease is outlined in a recent report from The National Academies of Sciences, Engineering, and Medicine.1
One of the central ethical issues is the vast majority of NIH funding related to dementia has gone to research looking for a cure, according to the report. “We get why people would want to do that. There really are no medications to effectively treat dementia,” says Tia Powell, MD, chair of the report writing committee and director of the Montefiore Einstein Center for Bioethics in New York City.
The problem is the failure to find a cure despite decades of effort has come at a cost to other research areas. “For people who actually have dementia, there is very little research on how we can support them or make their lives more comfortable,” Powell says.
There is a pressing need for more research on non-cure-based treatments for people living with dementia. “Millions of people actually need our help with things right now that are unrelated to a cure. That gap in our research is a real ethical concern,” Powell says.
It is not only medical treatments that are needed. “Even if they find a cure tomorrow, that’s not going to be beneficial to people with more advanced dementia,” Powell notes.
Social-behavioral research can help family members who are struggling to figure out where the loved one with dementia is going to live. “Research would be useful that helps us clarify how to balance respecting the values and preferences of a person living with dementia while still meeting obligations to keep vulnerable people safe,” Powell offers.
Critical questions about capacity makes important decisions (e.g., where to live and how to manage money) complex and troubling. “People living with dementia and their caregivers could use more support with these issues,” Powell observes.
Many people do not want their family members to go to a nursing home. “Nursing homes are super-expensive, and it’s hard to provide high-quality care there. But can you keep somebody at home safely? How do you keep a job and feed your family?” Powell asks.
Some patients with many needs cannot be remain at home, even though older spouses and others may try to continue caring for loved ones there. Data can help with the decision-making process. “It’s important for people to know: ‘What can we reasonably do?’” Powell says. “We do have an obligation to answer that with research.”
Investigators already struggle to find enough people with dementia (and their caregivers) to participate in studies. Ensuring study participants are sufficiently diverse is an additional challenge.
The report by Powell and colleagues calls for more research to determine the best ways to engage different communities. “We are not sure we are actually doing it well,” Powell acknowledges.
Traditional practice is to recruit dementia patients from academic physicians working at large medical centers. “Not everybody has the means to get care at a big, fancy medical center,” Powell admits.
Some researchers are connecting with study participants at faith-based settings; others are using new technology (e.g., Apple watches that gather data on cognitive function). “Approaches that work with community-based organizations and advocacy groups may be helpful in increasing diversity among research participants,” Powell suggests.
Informed consent is an inherent problem in studying dementia, since the illness causes people to lose decision-making capacity. This is less of an issue with low-risk interventions, such as what kind of leisure activities are satisfying for those with early-stage dementia.
Another approach to boost research participation is to enroll people when they still have decision-making capacity, and identify someone who can consent on the person’s behalf going forward. Researchers also need to study caregivers’ stress levels. “That’s a really important area that needs study, and we are encouraging people to look at,” Powell reports. “In some communities, the level of stress experienced by dementia caregivers is quite high.”
An older study revealed African American caregivers are not as depressed as white caregivers.2 “Is that something we can capture and help other people with? What are they doing right?” Powell asks. “It’s not about having more resources or more money. It’s something else that we don’t understand.”
Answers to questions of what kind of help people need at different stages of the illness also are needed. If someone is diagnosed at an early stage, that person might need financial advice, such as how to go about securing their bank accounts to protect funds from scammers. Someone at the end stages of the illness will need different help. “Dementia is a fatal illness, and those in the late phases will require end-of-life care,” Powell says.
This includes palliative care and hospice that is tailored to meet the needs of someone who is cognitively impaired. “We really encourage researchers to reach out to people living with dementia and their caregivers and ask them, ‘Please collaborate with us. What is it that’s hard for you? Where could we help you?’” Powell says.
- National Academies of Sciences, Engineering, and Medicine. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences.
- Pinquart M, Sörensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. Gerontologist 2005;45:90-106.