Alzheimer's Disease and Related Dementias
Information for Caregivers
Who is a caregiver?
A caregiver is a person who provides support to someone who needs help caring for themselves. A newer term being used is care partner to affirm the role and agency of the person who may need support because of an injury, disability, or chronic illness.
Many people are caregivers. They can provide care as a part of their job for pay or they may be family members or friends providing unpaid support.
Many Minnesotans who care for others do not see themselves as a caregiver. Caring for others may be considered an important and honorable familial duty, rather than a role that requires additional support.
How many unpaid family caregivers are there?
Nationally, there are about 41 million family caregivers who provide 34 billion hours of unpaid care to other adults, valued around $470 billion in 2017. In Minnesota alone in 2017, there were an estimated 640,000 adult caregivers who provided 540 million hours of unpaid care with a value around $8.6 billion.
An important group of adult caregivers are those that support others living with dementia. Ninety-two percent of all people living with dementia rely on support from family or other informal, unpaid caregivers.
Nationally, about half of all caregivers for older adults support people with dementia. In 2021, more than 11 million family members and friends in the US provided 16 billion hours of unpaid care to people with dementia, at an economic value of more than $271.6 billion. In Minnesota, an estimated 171,000 family caregivers supported people with dementia for a total of 156 million hours valued at $3.4 billion.
Age, gender, and income of dementia caregivers
- About 2 of 3 are women
- About 1 in 3 are 65 years or older
- For caregivers 18-49 years of age, the percentage caring for someone with dementia has increased 3-fold since 2015 (from 7% to 23%)
- Slightly more than 40% have a household income of $50,000 or less
Relationship to the person with dementia
- About 10% are providing support for a spouse with dementia
- More than 50% are supporting a parent or parent-in-law with dementia
Often juggling other family responsibilities
- Over 60% are married, partnered, or in a long-term relationship
- About 25% are part of the sandwich generation - caring for an aging parent and for at least one child
Often juggle work responsibilities
- About 60% are employed (average 35 hours per week) as they provide care or worked the year before they started providing care
- About 25% are part of the sandwich generation - caring for an aging parent and for at least one child
Provide care long-term and often alone
- Slightly more than 50% of family caregivers have provided dementia care for 4 or more years
- Slightly more than 40% are the only person providing unpaid assistance to the person with dementia
How are dementia caregivers different from other caregivers?
Dementia caregivers tend to provide more extensive assistance to individuals than caregivers do for other conditions. For instance, dementia caregivers are more likely to provide help with the following tasks:
- Helping with instrumental activities of daily living (IADLs), such as household chores, shopping
- Preparing meals, setting up doctors’ appointments, managing finances and other legal affairs
- Assisting with bathing, dressing, grooming, and use of the toilet and managing incontinence
- Managing behavioral symptoms of the disease such as aggressive behavior, depressive mood, agitation, anxiety, and repetitive activity and nighttime disruption
- Scheduling for paid in-home, nursing home or assisted living care
The Alzheimer’s Association offers daily caregiving resources to help caregivers adapt routines and activities as needs change.
How does caregiving for people with dementia affect caregivers?
While 45% of dementia caregivers in the US said that supporting someone with cognitive impairment was rewarding and many reported satisfaction from caring for family and friends, dementia caregivers do experience a higher burden of stress compared with other caregivers.
- Twice as many dementia caregivers reported substantial emotional, financial, and physical difficulties
- Depression and anxiety are more common among dementia caregivers, with higher rates for people caring for spouses versus other family members or friends
- The social networks of dementia caregivers decline in size more than for other caregivers
- Dementia caregivers lose more sleep and have poorer quality of sleep than other caregivers
- Dementia caregivers are more likely to report that their health is fair or poor
- Dementia caregivers have a higher risk of emergency room and hospital visits
What do caregivers for people with dementia need?
In a 2016 statewide survey, Minnesota adults who identify as caregivers were asked if they needed additional supports. Caregivers supporting people with dementia reported needing additional support at double the rate of other caregivers. Needed support may include:
- Classes about providing care
- Help accessing additional services
- Support groups
- Individual counseling to support them in their role, or respite care that provides short-term relief for primary caregivers
In addition, people serving in this critical role should have access to culturally responsive resources to support them in navigating dementia care and maintaining their own health and wellbeing.
What can caregivers do?
All care partners need support too! Caregiving can impact a care partner’s physical, mental, and financial health as well as their social support system. When care partners have the support they need, they can provide more support to the people they care for.
Remember, to take care of yourself. Take the time necessary to address your own individual physical and emotional health needs daily.
Here are some ways for handling some of the common challenges for caregivers from the University of California San Francisco: Patient Education Self-Care for Caregivers.
Where can memory loss caregivers access support?
Helpline phone numbers to call for immediate support:
- Alzheimer’s Association 24/7 Helpline: Call 800-272-3900. The Alzheimer’s Association 24/7 Helpline is available around the clock, 365 days a year. Dial 711 to connect with a TRS operator.
Through this free service, specialists and master’s-level clinicians offer confidential support and information to people living with dementia, caregivers, families, and the public.
- Minnesota Senior Linkage Line: Call 800-333-2433, Monday-Friday 8:00 a.m. - 4:30 p.m.
The Senior Linkage Line helps older Minnesotans and caregivers find answers and connect to the services and support they need, including trained Caregiver Consultants who can help you on an individual basis with problem-solving, information, skills, and emotional support.
- Volunteers of America – Minnesota and Wisconsin – Older Adults Culturally Responsive Caregiver Support Services: Helpline: 952-945-4034. Monday–Friday, 8:30 a.m. – 4:30 p.m. Caregiver Services support African American and East African older adults and their caregivers through support groups, health monitoring and education, and respite care. Adult caregivers or informal providers of in-home and community care are eligible for support, so long as they are caring for an adult 60+ years of age or an individual (of any age) with Alzheimer’s Disease and Related Dementias.
Resources, Classes, and Support Groups:
General Caregiver Resources:
- The Caregiver’s Handbook (PDF), National Institute on Aging. A guide to getting started, finding support, and taking care of yourself.
- Feeding America, a nationwide network of food banks and food programs. Connect with your local food bank to learn about upcoming free food distributions and to apply for national food programs like SNAP and WIC.
- Minnesota Board on Aging: Area Agencies on Aging (AAA). Contact your local AAA for local healthy aging and caregiver support resources and services.
- Juniper Classes (Trellis) Powerful Tools for Caregivers (Adults) Powerful Tools for Caregivers® helps family and friends caring for older adults with long-term health conditions develop the skills and confidence to better care for themselves while caring for others. Classes are available in Minnesota.
- Tips for Caregivers, Minnesota Senior Linkage Line.
- Caregiver Support & Respite, Lutheran Social Services of Minnesota Call 866-787-9802 or e-mail email@example.com.
- Amherst H. Wilder Foundation Support Groups for Caregivers: Call (651) 280-CARE (2273) or email firstname.lastname@example.org for more information or to RSVP for a caregiver support group. Wilder’s Caregiver Support Groups provides space for caregivers to feel less alone and receive mutual support from other caregivers. They offer online and/or at Wilder’s Health Aging & Caregiving Services location in Saint Paul.
Dementia Specific Caregiver Resources:
- FamilyMeans, Offer 6 monthly support groups (both online and in-person, day and evening), 4 monthly memory cafes, regularly scheduled caregiver education series, caregiver coaching and consultation, multiple group respite opportunities, and volunteer in-home respite. They also provide Dementia Friendly @ Work training to businesses, memory screenings in community locations, and dementia empowerment services for persons in early stages of cognitive decline. Call 651- 439-4840 or email email@example.com.
- Be a Healthy Caregiver, Alzheimer’s Association. (National)
- Helping You, Alzheimer's Association Minnesota-North Dakota Chapter. provides support, education, training and other resources to increase knowledge and to support those facing Alzheimer's disease and other dementias.
- I am a Caregiver, University of Minnesota Public Health Center of Excellence on Dementia Caregiving.
- Volunteers of America Culturally Responsive Caregiver Support and Dementia Services Team. Caregiver Services support African American and East African older adults and their caregivers through support groups, health monitoring and education, and respite care. Stay current by checking out the Lutheran Social Service of Minnesota Facebook
- Culturally Responsive Resources for Patients and Families, ACT on Alzheimer’s.
Learn more about Dementia and Dementia Caregiving in Minnesota:
Health Chatter Podcasts:
- The Remember Project Delivers two-hour events (live and virtual) that include a short play performed by professional actors who bring to life real issues connected to the care, diagnosis, and experience of dementia and how relationships can be tested in unexpected ways. Following the performance, audience members take part in a facilitated conversation about the themes, metaphors, and impact of memory loss depicted in the plays.
- Memory Keepers, The Center for Community Engaged Rural Dementia and Alzheimer’s Research (CERDAR). The Memory Keepers Medical Discovery Team is focused on collaborative research to improve dementia outcomes in Indigenous and rural communities.