Supports for caregivers so older adults can age in place 

It starts with a simple errand. Picking up a prescription, dropping off a hot meal, or providing a ride to an appointment. It’s helping a friend or a spouse after an illness or hospitalization or being neighborly to an older adult who lives down the street. Caregiving is a daily fact of life for hundreds of thousands of Minnesotans, yet most people don’t see themselves as a caregiver. It’s rewarding, disruptive, and challenging — all at the same time. Supporting caregivers is critical to everyone’s quality of life and emotional wellbeing.

Ready to help

After a fall, hospitalization, and short rehabilitation stay, Betsy Meyer of Menahga, Minn. knew her father would need more.

“The first few weeks were weird and scary,” said Meyer. “It was evident that things at [her dad’s] home would have to change.”  

In addition to physical limitations, her father’s cognitive abilities were declining. Meyer and her sister created schedules. A schedule for medicines. A schedule for meals. Schedules for bill paying, house cleaning, and shuttling him to and from medical appointments. For them, and many others in the early days of caretaking, it was all about the routine and leading with love.  

Making sure her dad knew he was loved and safe was so important. Meyer even moved in with her father; into a home which was also her grandparents. Though the rooms were familiar from her childhood and many holiday gatherings, every aspect of her day-to-day life was now different.

Caregiving and dementia

Caretaking for people with dementia can be especially challenging. Dementia causes people to have difficulty thinking, remembering, and problem solving in their daily life. Dementia is not a disease but a set of symptoms.  

Alzheimer’s disease is the most common cause of dementia, impacting more than 120,000 Minnesotans and contributing to between 60 to 80% of dementia cases. It develops over time in stages and is not a normal part of aging. Because these changes happen in stages, there are opportunities to reduce dementia risk and to start early planning and management.

Nationally, about half of all caregivers for older adults support people with dementia. This mostly unpaid time is estimated to be 156 million hours annually. Not all caregivers are spouses or adult children. In multigenerational households, it could involve teenagers or young adults, too.

Pivoting perspectives

Luckily, Meyer is no stranger to the roles of caregivers. As the Director of Programs and Partnership Development for The Remember Project, an organization that helps connect people and reduce the stigma of dementia, Meyer helps set up short plays by professional actors who bring to life real issues connected to the care, diagnosis, and experience of dementia as well as 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.

This work involves lots of public education and outreach and meeting lots of people in small community settings.

“I’ve listened to so many stories over the years,” said Meyer. “And it always comes back to the people. People sharing with people and feeling a part of a community.”

The public health community

Public health is a community of many partnerships — community organizations, including nonprofits, schools, and faith groups; city, county, and state governments; and the federal government. Just like a small town has a city hall, bank, post office, and grocery store that align along main street, public health creates systems and structures to support families. When public health works, it’s invisible and expected, just like a reliable sidewalk.

Public health works to reduce the risk of dementia as Minnesotans age. For example, with the Healthy Brain Initiative, the Minnesota Department of Health works with partners to educate communities about how they can improve brain health, connect people to early diagnoses and treatment, and provide resources to support the wellbeing and quality of life for people living with dementia and their caregivers.

In Minnesota, the state health department also funds organizations like the Remember Project to help educate families about risks related to memory loss, demonstrate the importance of early testing, and provide supports for people living with dementia and their caregivers.

Supporting caregivers

Caretaking is a job. It’s like working a double-shift or taking on a second job. Not everyone is able to take inventory of their obligations and re-evaluate their finances to make ends meet while reducing traditional work hours or workload. Professional work performance can suffer, social life disappears, and exhaustion sets in.

Fitting her work into this intensive family caregiving was a struggle for Meyer. Luckily, her entire family was ready to step up and offer their support. She reflected that the turning point for her was when she connected with another caregiver.  

“Just having someone who can relate made all the difference in the world,” said Meyer.  

Meyer’s work colleague at The Remember Project, Founder Danette McCarthy, was also beginning her own caregiving journey for someone living with a neurocognitive disorder, so the two of them found themselves building a stronger relationship focused on more than their work. Sharing stories and frustrations and small victories with McCarthy and these new common experiences helped them both cope. This passion, too, now spills over even stronger into their work.

Meyer added, “Caregiving for my dad has continually involved a steep learning curve. It had been more than 30 years since I last lived with my dad. Learning his routines, implementing new ones, learning about his two forms of dementia (Parkinson's disease dementia and Alzheimer's disease), and dealing with the daily unpredictability that ensued. My life felt completely upended. That changed once I found an outlet for connection — everything felt much more manageable.”

Caregiving can impact a person’s physical, mental, and financial health as well as their social support system. Dementia caregivers 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. 

Ways to help

• Care for caregivers. Help ensure caregivers have time for their own daily needs. When care partners have the support they need, they can provide more support to the people they care for and minimize or prevent their own health issues.
• Organize. Have a list of medications, contacts, appointments, and even the daily routine. This makes it easier to allow others to help.
• Connect to resources and supports. Seek out or share information on organizations, support groups, or other resources that can help caregivers. Some examples include, a local Alzheimer’s Association, Volunteers of America, or the Minnesota Aging Pathways. All have helplines that can offer immediate support and help with referrals to additional resources. 

“If I had one piece of advice it would be to stress the importance of self-care,” said Meyer. “The reality is caregiving is all consuming. Finding time to work, eat, go to my own medical appointments, or even sleep was difficult. We must talk about self-care, so caregivers know it’s OK to ask for help.”

Learn more about Alzheimer’s disease and related dementia on the MDH website, and find links for ways to reduce your risk, better understand signs and symptoms, as well as find testing options for you or a loved one.