To foster research that reflects the health needs and priorities of older adults, in 2022 CARE formed two standing community advisory boards of older people, called the Boards of Older Adult Advisors (BOAAs). The Rural and Madison BOAAs provide guidance to health researchers, including on study design, recruiting strategies and materials, and data analysis.
Building on BOAA members’ experiences providing input on health research, in mid to late 2024 CARE worked with the two groups to develop their own community aging research agendas that reflect their lived experiences and health priorities. The process used was an adaptation of the Dialogue Model for health research agenda setting, with exploration, consultation, and prioritization phases (Abma TA, Broerse JE. Patient participation as dialogue: setting research agendas. Health Expect. 2010;13(2):160-173. doi:10.1111/j.1369-7625.2009.00549.x).
The Madison and Rural BOAAs’ aging research agendas are included in full below. This work was supported by the UW–Madison Baldwin Wisconsin Idea Endowment.
To learn more about the BOAAs, contact Diane at farsetta@wisc.edu or 608-265-9542.
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Rural BOAA community aging research agenda
from the July and September 2024 meetings
Top priorities
#1. Aging in place well
Problem: There are challenges to staying in our homes as we age, which is what many people prefer
Research areas and questions:
- How can we make home environments safer to support aging in place?
- What policies would support people to age in place?
- What is the impact of property taxes on aging in place, especially for rural older adults?
#2 (tie). Social isolation and loneliness
Problem: Older adults and rural adults are especially susceptible to isolation and alienation, though it’s a widespread problem affecting people of all ages
Research areas and questions:
- What is the relationship between isolation, psychological distress, and physical health?
- How do we measure the impact of social connections on happiness, individual health, and community well-being?
- How can we facilitate bringing people together?
- What is the relationship between type of housing and isolation? (ex: are apartments more isolating)
- How can technology help reduce social isolation and loneliness?
- How can we encourage community members to take care of each other?
- What are the health benefits and risks of pets as we age?
#2 (tie). Family and friend caregivers
Problem: There is a need to improve communication with and support for family / friend caregivers, and for family members to “share the care” fairly
Research areas and questions:
- How can we make sure caregivers receive education on tasks and problems that may occur?
- How can we improve information sharing with caregivers who aren’t present when the person they help is receiving emergency care?
- What policies would enable family and friends to provide care?
- How can families be encouraged to work together / share the care?
- How can caregivers easily access technology to support the person they’re helping?
- How can technology enhance the ability of family and friends to provide care?
#2 (tie). Health promotion, behaviors, and prevention
Problem: Many people lack the information and support to prevent age-related health issues, or to understand what is normal aging and what is a problem that could be treated or prevented
Research areas and questions:
- What are effective ways to encourage older adults to engage in prevention?
- How can people better manage chronic conditions?
- How can people prevent loss or decline in vision, hearing, and mobility, to stay independent?
- What social issues keep older adults from activities that promote health?
- How do we encourage people to learn about aging throughout their lives?
#3. Healthcare quality, provider communication, and person-centered care
Problem: Poor communication and/or assumptions by the healthcare team lead to low-quality care that doesn’t reflect older adult needs and priorities
Research areas and questions:
- How can healthcare staff be trained to focus on what matters to the patient and quickly identify pressing issues?
- How can patients describe their health issues so providers understand what’s important?
- Do people from rural communities communicate differently with healthcare providers? (ex: complain less about pain)
- What are clearer ways to share test results, making clear what’s normal and what’s a problem? (ex: emojis, visualizations)
- How can we improve the information provided at discharge, so people know what to watch out for?
- How can healthcare providers be trained to care for older people and be aware of their own age-related biases?
- How can technology be used in ways that don’t complicate or decrease the quality of healthcare communications?
#4 (tie). Access to information
Problem: There are barriers for older adults and rural residents to receiving accurate information
Research areas and questions:
- How can we make health information more engaging? (ex: share personal stories)
- How can we help more people understand Medicare regulations?
- How do older adults in rural areas get up-to-date health information?
- How does the proliferation of media influence healthcare for older people?
- How can we share information when there are fewer newspapers and local media?
#4 (tie). Nutrition
Problem: People may not know how to choose, prepare, and eat foods that promote health
Research areas and questions:
- How can we support healthy aging through nutrition?
- How do we prevent and deal with obesity?
- What common practices might make food less healthy? (ex: preservatives, undercooked food, microwave cooking)
Other areas of interest
Housing
Problem: There is a shortage of housing, especially affordable housing in rural communities
Research areas and questions:
- How does the stigma around affordable housing impact small town/rural housing policies?
- What policies would support an increase in affordable housing?
Access to care
Problem: There are significant barriers to accessing mental health and dental care in rural communities, as well as shortages of long-term care facilities and in-home care providers
Research areas and questions:
- How does Medicare policy impact access to mental health and dental care?
- What are the barriers to people getting dental care? Survey people of all ages
- Why are people screened for mental health but not connected to care, even when there are providers?
- How can we increase access to in-home care in rural communities?
- What policies could encourage more people to provide home care?
- How can people without transportation be supported to access care?
Financial health
Problem: Financial insecurity leads to health disparities
Research areas and questions:
- Could promoting benefits (like SSI) support the health of lower-income people?
- How can financial insecurity be prevented throughout life?
- What policies support the health of lower-income people?
Health research
Problem: Older adults are under-represented in health research
Research areas and questions:
- What is the best way to get older adults to participate in research?
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Madison BOAA community aging research agenda
from the August and October 2024 meetings
Statement on health disparities
Historic and ongoing systemic discrimination leads to health disparities for people of color and others targeted by unjust policies and practices. Health issues that people experience today may have been caused or worsened by unfair limitations on their access to healthcare, information, transportation, and other resources. The Madison Board of Older Adult Advisors (BOAA) encourages researchers to address the health impacts of systemic discrimination. BOAA members want to work with researchers to improve the health of future generations.
Top priorities
#1. Improving communication in healthcare
Problem: Poor communication and assumptions by the healthcare team, along with older adults not knowing how to communicate with providers, lead to low-quality care
Research areas and questions:
- How can healthcare organizations do a better job of assessing and meeting the needs of each patient?
- How can healthcare providers be trained to better ask questions and listen, to understand people’s health issues and what may be causing them?
- How can healthcare providers be encouraged to talk to the person who’s the patient, not just the family member accompanying them?
- How can we encourage healthcare providers to communicate and act with empathy?
- How can people be prepared to track and describe their health problems to healthcare providers?
- How can we help people determine which problems to tell providers about?
- How can people be encouraged to share what previously helped them with healthcare providers?
- How can people be supported to advocate for themselves in healthcare settings?
- How can people learn what to expect with aging?
- How can we make health information and research opportunities more accessible to community members, including people who do not speak English?
#2. Reducing disparities in healthcare
Problem: Due to systemic discrimination, older people of color and others targeted by unjust policies and practices have more trouble accessing care and receive poorer quality healthcare
Research areas and questions:
- What role do race, education, income, residence, access to transportation, and previous negative experiences with the healthcare system play in determining access to quality care?
- How can we support the health of people who delay seeking care or have trouble accessing the healthcare system?
- How can we make medications more affordable, so cost isn’t a barrier?
#3. Supporting family and friend caregivers
Problem: Healthcare providers often don’t engage or educate family and friend caregivers of older adults
Research areas and questions:
- How can we encourage healthcare providers to share information and coordinate with family caregivers?
- How can we better connect family caregivers with relevant resources?
- Does involving family caregivers improve the health of the person they’re helping?
#4 (tie). Reducing disparities in Alzheimer’s disease and related dementias (ADRD)
Problem: Systemic discrimination contributes to higher rates of ADRD in communities of color and among other groups targeted by unjust policies and practices
Research areas and questions:
- How do the rates of ADRD compare across different racial and ethnic groups?
- What factors drive disparities in ADRD rates?
- How do stress, poverty, living in under-resourced neighborhoods, not exercising, homelessness, limited access to care, and food deserts impact ADRD rates?
- How does someone’s background, including where they grew up, what they ate, and their education, affect their risk of developing ADRD?
- What is the role of genetics or family history in ADRD risk?
- How can we increase access to information about ADRD in communities of color?
- Why is the age-adjusted death rate for Alzheimer’s disease higher in Dane County than in Wisconsin or the U.S. overall?
#4 (tie). Supporting quality sleep and rest
Problem: There are many barriers to older adults getting enough sleep and rest
Research areas and questions:
- How do noisy environments impact sleep, rest, and health?
- How do work shifts impact sleep, rest, and health?
- What can healthcare providers do to help people get quality sleep and rest?
Other areas of interest
Improving nutrition
Problem: Cost and other barriers to eating well can cause or worsen health problems
Research areas and questions:
- Does eating processed food affect your health?
- Does eating organic food, vegetables, or grass-fed meat improve your health?
- How can we lower the cost of eating healthy foods?
- How can we adapt traditional recipes to be healthier?
Increasing physical activity
Problem: It is difficult for Black older adults, people in big cities, and people with fewer resources to be physically active
Research areas and questions:
- How can people get enough exercise, even if they live in less safe areas or can’t afford health club memberships?