A conversation about providing support for those who are caring for family members with dementia — and a few resources to help.
By Cindy Glazer and
Nancy Udelson
Cindy Glazer is a retired special educator. She was caretaker for her husband, Jim, who lived with frontal lobe dementia. It was especially challenging as his disease became most demanding during the early months of COVID in 2020.
Nancy Udelson retired from her position as CEO of the Alzheimer’s Association Cleveland Area Chapter after more than 12 years in June 2020. She is currently training to be a Support Group Facilitator at the association.
The role of caretaker is demanding and often frustrating, regardless of the needs of their loved one. The need for the caretaker to get support cannot be underestimated. These resources represent just some of the options available for caretakers of individuals with dementia.
Cindy: “When my husband was ill with frontal lobe dementia, I found that it was difficult to find accessible resources for support. 24/7 care was taking all of my time and energy, and I truly needed help. I am hopeful that your knowledge and experience can help caregivers find options that work for their particular situation. First, what types of resources are available?”
Nancy: “As the number of diagnosed individuals continues to increase, it is no surprise that there are more resources available today than there were even
five years ago. Listed (see box below) are just a few of the resources available in Northeast Ohio. Many local communities have caregiver support programs, so be sure to check out your local resources.”
Cindy: “What are the benefits of dementia support groups?”
Nancy: “Dementia caregiver support groups provide a valuable network of emotional support, caregiving advice and community. Whether in-person or online, these groups can help caregivers manage stress, learn new strategies and connect with others who understand their journey. If you’re looking for support, explore the listed resources and find a group that meets your needs.
“Alzheimer’s Association support group facilitator Ruth Elliott shared, ‘The families in my groups have reiterated how valuable participating in a support group has been for them. They talk about how important it is for them to have a safe space to openly express their challenges to a group of people who truly understand. They appreciate having access to “best practices” and reliable resources, but most importantly they value being able to receive and offer validation, compassion, tips and support to and from other group members.”
“Wayne, a member of the Olivet Institutional Baptist Church support group, is a caregiver for his mother and shares caregiving responsibilities with his sister. He says it is helpful to get input from other people dealing with the same issues.”
Cindy: “What other advice would you offer caregivers to help them prepare to get through the challenges of a loved one with dementia?”
Nancy: “Try to find programs that will engage the person with dementia in meaningful activity while also giving you some time away from caregiving. Caregiving takes a tremendous amount of energy and patience.
“Resources such as the ones listed in this article will help you manage your journey with Alzheimer’s or another dementia. Taking care of yourself physically, mentally and emotionally are vitally important to both you and your loved one. Don’t be afraid to reach out for help.”
Caregiver Resources
Alzheimer’s Association
Helpline is a free service offering support for people living with dementia, caregivers, families and the public 24/7. Translators are available. My ALZ Journey, the Association’s free mobile app, provides step-by-step support, tailored tools and trusted information to make early-stage planning easier for newly diagnosed people and their care partners.
24/7 Helpline 800-272-3900; dial 711 to connect with a telecommunications relay service (TRS) for people who are deaf, hard of hearing or speech impaired. alz.org
Benjamin Rose
Benjamin Rose provides both in-person and telephone-based programs and a free website offering solutions for dementia caregivers. 890 Fairhill Road, Cleveland, 216-791-8000, benrose.org
Best Programs for Caregivers
A first-of-its kind, free online database that offers family and friend caregivers detailed information about proven dementia care programs that are available in their own community. bpc.caregiver.org
The Carolyn L. Farrell Foundation for Brain Health’s Center for Artful Living
It helps to empower, engage and educate individuals, care partners and families living with dementia or other brain health issues to live a more fulfilling life through the arts, social interaction and community outreach. 440-414-0434, farrellfoundation.org, email
info@farrellfoundation.com
Memory Cafe
Memory cafes are social gatherings designed for individuals living with memory loss, along with their families and caregivers, to connect with others in a supportive and engaging environment. They aim to reduce social isolation and stigma associated with dementia, offering opportunities for social interaction and education. Many local libraries and community centers offer regular memory cafes, so check your local resources.Dementia Friendly America (DFA) memory cafe directory: dfamerica.org/memory-cafe-directory; Life: A Dementia Friendly Foundation, dflife.org
VA Caregiver Support Program
The Department of Veterans Affairs (VA) Caregiver Support Program (CSP) offers clinical services to caregivers of eligible and covered veterans enrolled in the VA health care system. The program’s mission is to promote the health and well-being of family caregivers who care for veterans, through education, resources, support and services. caregiver.va.gov
Western Reserve Area Agency on Aging
WRAAA provides free services and programs that give older adults and persons with disabilities access to information, care planning, consultation, and long-term care services and support.
1700 E. 13th St., Suite 114, Cleveland,
800-626-7277, ext.3131
areaagingsolutions.org/programs-services/family-caregiver-support/
