Helping those with Alzheimer's and dementia through caregiver educationQ&A with Debra Johnson: Nonprofit Journal Project

Debra Johnson is the president of the Dementia & Alzheimer’s Association of St. Clair County. The organization was established in 2014 and supports those with dementia and Alzheimer’s through advocacy, education, resources and support. She is also the chief executive officer for St. Clair County Community Mental Health.

What is the Dementia and Alzheimer’s Association of St. Clair County?

We are a local nonprofit that supports caregivers and those living with dementia and Alzheimer’s disease through awareness, education, respite care grants, and resource referrals.

The association is currently volunteer-run, working to connect those in the community with the resources needed to improve the lives of those living with dementia and Alzheimer’s disease and support their families.

How is Alzheimer’s different from dementia?

Dementia is an umbrella term that describes a range of neurological conditions affecting the brain that worsen over time. As we age, losing some neurons in the brain is normal. People with dementia experience a far more significant loss.

Alzheimer’s disease is a form of dementia. There are more than 100 forms of dementia. However, Alzheimer’s is the most well-known. The most common forms of dementia are Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. While the boundaries between these types are not necessarily distinct, Alzheimer’s disease and vascular dementia account for 90 percent of dementia cases.

How can the Dementia and Alzheimer’s Association of St. Clair County assist community members, especially individuals living with dementia-related conditions and their caregivers?

The association has four focus areas:

Awareness: Caring for someone with memory loss is often isolating. Bringing awareness to the disease and encouraging families to share their challenges and successes is essential. Currently, the association celebrates the lives of those living with dementia and Alzheimer’s disease while bringing caregivers and their families together through our annual 5K run/walk. This event is hosted every September.

Education: People who care for someone with a dementia-related condition face many challenges. Through caregiver education, we can support caregivers by helping them learn more about the disease, understand what to expect, and practice the critical component of self-care and stress management. The association hosts caregiver education events several times a year to provide such education.

In the past, we’ve hosted sessions, in partnership with Michigan Medicine providers from the Michigan Alzheimer’s Disease Center, with topics such as Genetic & Biomarker Testing for Alzheimer’s Disease, Safety and Security Concerns for People Living with Dementia, and Understanding Alzheimer’s Disease.

Educational seminars and events will continue to be offered annually, and those interested in attending future sessions can follow us on Facebook or visit our website.

Respite Care Grants: Respite care provides caregivers a temporary rest from caring for a loved one. This allows caregivers time to take care of errands while having peace of mind knowing their loved one is safe. The respite care grants are available for residents of St. Clair County who are the primary caregiver of an individual diagnosed with any form of dementia by a physician. While there are a few restrictions, there are no income requirements for program eligibility. Local health care agencies will care for your loved one in your home or an adult day care center.

The association was recently awarded a $25,000 grant from The Ralph C. Wilson Jr. Legacy Fund for Caregivers from the Community Foundation for Southeast Michigan. Those interested in applying for a respite grant should use the online form.

Resource Referral: Every person’s needs are unique regarding dementia and Alzheimer’s care. The association provides resources and referrals, including support groups, activities, safety, legal matters, caregiver support, adult day programs, in-home care, residential care, and research.

We have come a long way in learning more about dementia and Alzheimer’s and how to care for those diagnosed. Have these caregiving strategies changed over the years?

Finding out a loved one has a dementia-related condition has always been frightening, stressful, or overwhelming. What is helpful is that we have learned a lot about these diseases and how to care for those living with them.

Through the years, research has taught us more about what dementia-related conditions do to our bodies and minds, and we’ve seen improvement in medications and early diagnostic testing. More significantly, we’ve moved into a space where we respect the lives of those living with these diseases rather than trying to control them.

We encourage individuals with dementia-related conditions to learn all they can about the disease, write their questions down and save time at each doctor’s appointment to review their questions.

When caring for someone with a dementia-related disease, through the years, we’ve learned it is best to avoid open-ended questions and focus on yes/no questions; to redirect rather than argue; to eliminate clutter, noise, glare, and excessive background noise; and to allow rest between stimulating events. These are just a few suggestions learned through research and studies.

Why is it important for caregivers to receive continuous education on dementia and Alzheimer’s?

We have learned more about this family of diseases in recent years. To provide the most positive experience for the person living with dementia, and their families, it is important to keep abreast of the most updated information. There is always an opportunity to learn.

Continuing to learn also helps us grow as a community; we can provide better resources and support to all those around us. Developing a robust network of support allows all of us to thrive.

What are a few strategies caregivers can incorporate into their routines to practice good self-care?

One of the most important self-care activities is ensuring caregivers take time for themselves and care for their needs. This is why the respite grants from the Dementia and Alzheimer’s Association of St. Clair County are critical. These grants allow caregivers this time while their loved one is safely and comfortably cared for.

Other tips include: eating a well-balanced diet; drinking plenty of water; exercising, even if it is a short walk daily or three times a week; scheduling rest between activities; getting a good night’s sleep; setting limits to what you can and can’t do in a day; and sharing your feelings with someone you trust.
This entry is part of our Nonprofit Journal Project, an initiative inviting nonprofit leaders across Metro Detroit to contribute their thoughts via journal entries on how COVID-19, a heightened awareness of racial injustice and inequality, issues of climate change, and more are affecting their work--and how they are responding. This series is made possible with the generous support of our partners, the Michigan Nonprofit Association and Co.act Detroit.
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