There are over 11 million people in the United States who provide unpaid care for a loved one with dementia, including Alzheimer’s Disease (AD). Caring for those with dementia often falls to a child, partner, or close friend, and often with little or no disease-specific knowledge or resources. It is a challenging but rewarding role. In 2022, dementia caregivers in Oregon alone contributed over $7 billion in unpaid care and often reported high stress and mental health challenges, with their well-being put on the back burner. Although caregivers report knowing that preserving their own health and social relationships is vital, many find themselves unable to follow through.
An AD or dementia diagnosis affects not only the patient but also their entire support network. Self-care helps to avoid burnout and enables caregivers to provide the best care they can for their loved ones. Like those with dementia, it is also essential for caregivers to remain engaged with their hobbies and social networks. There are a multitude of resources available for caregivers but are only effective if caregivers are informed of them.
Education in disease progression is essential and can come in two forms: information about the disease itself and information about the resources available to them. There is a sea of information available online, but it can initially seem overwhelming or confusing.
The Alzheimer’s Association is an organization dedicated to Alzheimer’s care and research. Their website provides endless information including educational resources, support groups, and caregiver forums with local chapters across the country. The local Oregon and SW Washington chapter hosts weekly support groups and a variety of other events for people with dementia to attend and groups just for caregivers. The chapter also hosts educational sessions. More information, including events and meeting times, can be found on the Alzheimer’s Association website. You can also subscribe to their monthly newsletter to keep up to date with events and information. They also host AlzConnected, an online discussion forum for both people with dementia and their caregivers to ask questions, share experiences, and provide knowledge.
HOPE Dementia Support hosts support groups in Vancouver and nearby areas in addition to virtual groups. They also offer educational seminars for people looking for more information about dementia or caregiver resources. Attending events can be helpful for a person with AD to stay engaged and allows caregivers to talk with people in a similar situation.
Alzheimer’s Foundation of America (AFA) was founded by an AD caregiver to provide educational resources. AFA offers a helpline, support groups, and information about clinical trials for AD. Their helpline can be contacted at (866) 232-8484.
Counseling services are another option for caregivers and those with dementia. Dr. Meghan Marty founded Rose City Geropsychology and specializes in treating older adults and their families as they deal with life adjustments, cognitive impairment, and related issues. Lori Eckel is a licensed clinical social worker who focuses on supporting families as they navigate dementia and plan future care. The OPAL Institute provides neuropsychological evaluation, therapy, and other services for aging adults and their families.
In many cases, a family is unable to manage dementia care alone. Additional assistance can come in many forms and will vary based on what is most appropriate for each person. For people still able to live at home, home healthcare workers may provide some assistance to reduce the pressure on an unpaid caregiver. Visiting Angels and Home Instead offer in-home assistance. Day centers allow older adults social interaction and care while giving caregivers some time off. Some local options include Thelma’s Place and A Place at the Center. Gentog offers a unique approach with intergenerational daycare by combining care for seniors with daycare for children. When living at home is no longer safe for a person with dementia, many options are available with a range of independence and care including retirement homes, assisted living, and memory care. A resource that may help in finding the most appropriate option is 1st Choice Advisory Services located in Oregon and Washington. They are a free advisory service to help caregivers learn about housing.
Becoming a dementia caregiver comes with many life changes that no one should have to go through without guidance. Luckily, there is a wealth of resources available, and knowing where to look is the vital first step. This helps caregivers to provide the best possible support while also making sure they take care of themselves.
Engaging in clinical trials can be beneficial to a person with dementia and their caregivers too. Clinical trials are voluntary and conducted to see if an investigational product is safe and effective. Some of the reasons to partake include taking an active role in one’s treatment, receiving cognitive and lab testing to monitor the progression of the disease, furthering the body of knowledge for dementia and its treatment, and the ability to regularly meet with a physician specialized in that type of care for free. These benefits can drive a feeling of purpose for the caregiver and the person with dementia. If you are interested in learning more about clinical trials, fill out our online submission form, to begin with a free memory screen.
Sources:
Alzheimer’s Association. (2023) Alzheimer’s Disease Facts and Figures. https://www.alz.org/alzheimers-dementia/facts-figures.
Alzheimer’s Association. (n.d.). Support Groups. https://www.alz.org/orswwa/helping_you/support_groups.
Bressan, V., Visintini, C., & Palese, A. (2020). What do family caregivers of people with dementia need? A mixed‐method systematic review. Health & social care in the community, 28(6), 1942-1960.
Oregon Department of Human Services. (2020) Family Caregiver Handbook. https://sharedsystems.dhsoha.state.or.us/DHSForms/Served/de9398.pdf