Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities
Healthy Brain Initiative for People with Intellectual and Developmental Disabilities
The World Health Organization (WHO) defines brain health as a developing and dynamic concept that includes neural development (nervous system), plasticity (the brain's ability to change and adapt due to experience), functioning, and recovery across the lifespan (WHO, 2021). WHO defines good brain health as “a state in which every individual can realize their own abilities and optimize their cognitive, emotional, psychological, and behavioural functioning to cope with life situations.” The Healthy Brain Initiative for People with Intellectual and Developmental Disabilities (IDD) is a project focused on promoting good brain health. Its aims are to raise awareness of brain health among people with IDD and develop positive approaches to support people with IDD experiencing Alzheimer’s disease and other dementias. This includes building interprofessional partnerships for an inclusive, competent workforce and improving health outcomes by better engaging people with IDD and caregivers to access quality healthcare related to brain health. The 5-year project was awarded in 2020 to the HealthMatters™ Program at the University of Illinois Chicago (UIC) and is funded by the Centers for Disease Control and Prevention (CDC).
Health Equity for People with Disability
The Healthy Brain Initiative (HBI) is led by the HealthMatters™ Program team, UIC ENGAGE-IL Geriatric Workforce Enhancement Program, and the National Task Group on Intellectual Disabilities and Dementia Practices. HBI is developing culturally tailored brain health messages, resources, and trainings accessible to people with IDD, families, caregivers, community partners, and public health and healthcare professionals.
The team is working with the International Association for Indigenous Aging (serving American Indians and Alaska Natives) and UsAgainstAlzheimer’s (serving diverse communities) to ensure disability-friendly and universal design approaches to enhance cultural humility and increase awareness of brain health and dementia-positive approaches among people with IDD across diverse communities.
The project addresses the misconception that Alzheimer’s disease and various types of dementias are a natural course of aging for people with IDD. We are beginning to develop a central resource for strategies to improve brain health across the lifespan for people with IDD and to support the health and wellness of caregivers. Working with local, state, and national partners, we expect to raise awareness of brain health and health equity among people with IDD as a public health issue.
We will support better healthcare access, reduce the high prevalence of complex health conditions, and optimize brain health.
Health is a Civil Right
People with IDD are living longer, which is a great success due to advances in medical care, education, and social environment (Heller et al, 2018). With this, as with the general population, comes the need to convey the messages of “dementia is a challenge for everybody” and “brain health matters for everyone!” People with IDD experience significant treatment challenges related to Alzheimer’s disease and other types of dementia due to lack of early diagnosis, overdiagnosis, and inadequate treatment approaches.
With improved life expectancies, people with IDD are experiencing new healthcare needs. As such, people with disabilities have new expectations about being able to live meaningful lives. Disability is now seen as a natural and beautiful part of human diversity in which people living with disabilities can take pride. By eliminating systemic barriers, derogatory attitudes, and social exclusion, we will support better healthcare access, reduce the high prevalence of complex health conditions, and optimize brain health.
Dementia is not a Natural Course
The age of onset of Alzheimer’s disease and other dementias may be earlier and symptom presentation may differ from that of the general population, particularly among adults with Down syndrome (Heller et al, 2018). To diagnose dementia, provide appropriate treatment options, and reduce preventable hospitalizations, ongoing assessment of brain health is critical for people with IDD. Identifying early symptoms of dementia among people with IDD is challenging for caregivers due to symptoms that are masked by lifelong neurocognitive deficits. For example, a study of 200 aging adults with IDD found changes in independence with daily living skills was a common early symptom often missed by caregivers and clinicians (Strydom et al, 2007); and, consequently, under-recognized symptoms result in a delay of interventions that can aid in caregiving and quality supports for people with IDD to maintain their dignity and quality of life. Building capacity among caregivers is critically needed in the areas of dementia education, problem-solving approaches to behavioral symptoms, communication and simplification techniques, environmental modifications, and access to respite care and other local resources (Gitlin et al, 2017).
During the next five years, we will be developing and implementing a brain health webinar series, training and technical support for HealthMatters™ instructors, and other materials for people with IDD and their caregivers. One example is the Healthy Brain Initiative Road Map for People with IDD, which will include nutrition and dietary guidelines, positive memory care solutions in home and work settings, and an accessible brain health risk appraisal tool. All of these initiatives support positive approaches to advancing brain health and raising awareness about dementia.
Pillars of Brain Health
Healthy Brain Initiative investigators recently held a teleconference for three individuals receiving community support services in the Chicago area and two employees of a day/residential community organization. We asked each of them about the meaning of “healthy brain” and what they do to keep their brains healthy. We also discussed how others could support healthy brains across the lifespan. Their responses are summarized here:
Bill, Julie, and Helen* provided insightful perspectives on what a healthy brain means to them. Aligned with Cleveland Clinic’s 5 of the 6 Pillars of Brain Health, they shared ways they reduce stress and keep their brain calm.
- Do physical exercises.
- Eat healthy, nutritious. “Making sure you eat properly,” (Helen).
- Have good sleep habits and ways to relax each day. “Need lots of sleep for your brain to calm down,” (Julie). “Getting enough sleep,” (Helen). “Keeping away from stress,” (Helen). “You need enough sleep,” (Bill).
- Do activities that help mental fitness. “Relaxation, working hard,” (Julie). “Working hard, doing things that make your brain work, work on math, reading… want [my] brain to calm down, relaxation, working hard on crossword puzzles,” (Helen). “For my job i have to have a healthy brain so i can do my job right, you need a healthy brain for any type of job you do,” (Bill).
- Enjoy social Interaction. “When I am stressed out about stuff, I like to read to take my mind off, talk to friends or family on the phone, do things that are fun,” (Helen).
Accessible Brain Health Ideas
In discussing brain health in their daily lives, Bill, Julie, and Helen incorporated a disability perspective that can benefit everyone, to optimize their brain health. For example, working on mindfulness with coloring books and paint-by-numbers. “I also have a paint by number app on my tablet that I do when I am stressed out,” (Helen). Use of an iPad with a paint-by-numbers App was an accessible option for people needing more visual and dexterity access options.
Brain Health Community: Working Together
“Working as a community made it easy for participants to ask for help and feel not so ashamed,” (staff). “As a community, [we] have a theme, and a weekly challenge that we can carry through each week, which supports people to be more social, connected, and alert,” (staff).
*Participant names have been changed to protect their privacy.
2021 Healthy Brain Webinar Series for People with IDD
This webinar introduces the Healthy Brain Initiative and seeks questions and comments for ongoing brain health resources through the five-year project.
Gitlin, L. N. (2017). Supporting family caregivers of persons with dementia in the community: description of the “memory care home solutions” program and its impacts. Innovation in Aging, 1(1), igx013.
Heller, T. et al. (2018). Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 4, 272–282.
Strydom, A. et al. (2007). Prevalence of dementia in intellectual disability using different diagnostic criteria. The British Journal of Psychiatry, 191(2), 150–157.
World Health Organization. (2021). Brain Health. https://bit.ly/3cklnb2