A caregivers guide to dementia: How to take care of yourself and support a loved one with dementia

Every post on AlzConnected, a message board for individuals caring for loved ones with Alzheimer’s and dementia, is heartfelt and authentic. (Is it normal for an Alzheimer’s patient to wave to himself in the mirror? What’s the best way to handle fantastical delusions? Is there a checklist for keeping the household environments safe for a dementia patient? I need to vent a little; I am mentally and physically exhausted and it seems like I have rarely had a moment to myself in years.

The board, created by the Alzheimer’s Association and part of a platform to provide support around the disease and the people it affects, has thousands of posts. Some come from spouses and family members of the newly diagnosed, others are questions about various stages of memory loss, and still others are requests for guidance on navigating memory care or how to care for themselves while caring for someone else. These are people experiencing the enormous changes Alzheimer’s and dementia undoubtedly have on patients and their families. And, for those who’ve never experienced a diagnosis like dementia or Alzheimer’s, there’s no real way to know what they don’t know and what lies ahead until they’re living it every day. 

Currently, more than 6 million Americans are living with Alzheimer’s disease. By 2050, that number is anticipated to reach 13 million. The amount of invisible and often unpaid work involved in managing and caring for that population is tremendous. In fact, the Alzheimer’s Association reports that in 2022 alone, an estimated total of 18 billion hours (valued at about $339.5 billion) were spent by unpaid individuals caring for loved ones. Spouses, children, friends and family members tasked with caring for a loved one often struggle to build their own network of support. 

The invisible work of caregiving

Caregivers are often managing their own lives on top of their loved one’s dementia or Alzheimer’s care. This rings especially true for adult children, who might still have children of their own to raise and care for on top of a career. The National Alliance for Caregiving (NAC) and AARP reported in 2020 that roughly 61% of caregivers have jobs and 45% stated they’ve experienced the financial impacts of being a caregiver. Twenty-four percent of the survey respondents said they’re caring for more than one person, while 24% say their own health has declined since taking on the care of their loved one.

Tapping into networks like the one at AlzConnected can remind caregivers that they aren’t alone, help them stay connected to their own needs, or offer valuable perspectives as they manage the later stages of their loved one’s disease. “We have more than 1,000 new members who join AlzConnected every single month,” says Monica Moreno, Senior Director of Care and Support at the Alzheimer’s Association. “It’s a place to share and support one another.”

Educate yourself

As we age, changes normally happen in the brain, says Moreno. At the same time, some changes don’t fall within that normal range and may indicate a more serious diagnosis. Part of Moreno’s job is bolstering awareness of Alzheimer’s and dementia so diagnosis happens early. “It’s not discussed enough,” says Moreno.  “There is a lot of misunderstanding around dementia and Alzheimer’s.” 

Moreno is clear that education and early diagnosis are key factors in helping prepare for the next wave of Alzheimer’s and dementia patients. From open communication within families to accessing doctors with the appropriate tools for diagnosis, many factors ultimately feed into building a support system around the disease. “There are 10 warning signs for Alzheimer’s disease,” says Moreno. “If you even recognize one, we encourage people to go to the doctor. “At the end of the day, families and individuals need to be champions for getting an early and accurate diagnosis.”

Lean on helpful tools

Several organizations offer a wealth of information and research, such as:

Podcasts such as Bob’s Last Marathon and Life on Repeat offer up candid perspectives on the ins and outs of dementia caregiving. 

Educate your circle 

The more you can advocate for yourself as a caregiver, the more supported you’ll feel and the better off your loved one will be, too. Sarah Dulaney, Clinical Director at Care Ecosystem at the Memory and Aging Center at University of California, San Francisco, says this is especially important for the sandwich generation, who are often working, raising children and caring for aging parents. 

It’s also important to know the ins and outs of the Family Medical Leave Act. In fact, according to a 2022 paper released by the Rosalynn Carter Institute for Caregivers, one 2019 study showed that nearly 22% of the US work force identified as a caregiver, with 60% working at least 40 hours on top of caregiving. “They have limited time,” says Dulaney. “How can employers support them to remain in the workforce so people don’t have to make those kinds of decisions?” It’s important to talk to your employer about your situation and keep an open line of communication so that when conflicts or emergencies arise, your boss has the opportunity to support you, too.  

Share your experience with close friends and those you trust in your community. It can be so helpful, whether that results in help with occasional childcare or a midweek meal delivered to the house. These small gestures can go a long way to keep caregivers afloat during particularly busy weeks. 

Put yourself first

Assuming the responsibility of someone else’s care is stressful. Overall, reports the Family Caregiver Alliance, individuals caring for others have higher risk of heart disease, an increased likelihood of developing serious illness, and diminished immune response in comparison to those who are not caregivers. It may not always be intuitive to put yourself first as a caregiver, but self-care is an important part of caring for others. Here are a few things to keep in mind as you build a structure for self-care and overall wellness. 

  • Schedule regular sessions with a mental health professional or clinical psychologist to support your mental wellbeing. Work through your insurance to find someone in your area, or ask your primary care physician for a referral. 
  • Make exercise, sleep, and nutrition a priority. 
  • Connect with the people in your life, too. Carve out time to socialize and do some of the things you enjoy. 
  • Plan caregiving breaks, if possible, when you can take a few days to focus on yourself and other important relationships. 

Look for expert advice

As the healthcare industry explores ways to improve care for Alzheimer’s and dementia patients, it is also considering the experience of caregivers, too. In August, the Alzheimer’s Association launched the Dementia Care Navigation Roundtable (DCNR), to build consensus among experts around dementia care as well as support for caregivers navigating the dementia care system.  

Through DCNR, the Alzheimer’s Association has assembled a panel of experts who are building out new ways to not only diagnose dementia early but also guide families through making decisions and accessing appropriate care. In addition, the pilot will address various barriers (financial, linguistic, cultural, logistical, and educational) to ensure patients and their caregivers have access to the support they need. “It can be very isolating and there’s a stigma to it,” says Moreno. “For caregivers who are already overwhelmed it can take a huge burden off their shoulders.”

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