Every post on AlzConnected, a message board for people caring for loved ones with Alzheimer’s and dementia, is heartfelt and authentic. (Is it normal for an Alzheimer’s patient to greet themselves in the mirror? What’s the best way to handle fantasy disappointments? Is there a checklist for keeping home environments safe for a dementia patient? I need to vent a bit; I am mentally and physically exhausted and seem to have rarely had a moment to myself in years.)
The forum, created by the Alzheimer’s Association and part of a platform to provide support for the disease and those affected by it, has thousands of posts. Some are from spouses and family members of the newly diagnosed person, others are questions about various stages of memory loss, and still others are requests for guidance on how to navigate memory care or how to care for yourself while caring for someone else . These are people who experience the enormous changes that Alzheimer’s and dementia undoubtedly have on patients and their families. And, for those who have never experienced a diagnosis like dementia or Alzheimer’s, there is no real way to know what they don’t know and what to expect until they experience it every day.
Currently, more than 6 million Americans are living with Alzheimer’s disease. The number is expected to reach 13 million by 2050. The amount of invisible and often unpaid work involved in managing and caring for that population is enormous. In fact, the Alzheimer’s Association reports that in 2022 alone, an estimated total of 18 billion hours (worth approximately $339.5 billion) were spent by unpaid people caring for loved ones. Spouses, children, friends and family members who are responsible for caring for a loved one often struggle to build their own support network.
The invisible work of caregiving
Caregivers often manage their own lives in addition to caring for their loved one’s dementia or Alzheimer’s. This is especially true for adult children, who may still have children of their own to raise and care for in addition to their careers. The National Alliance for Caregiving (NAC) and AARP reported in 2020 that approximately 61% of caregivers are employed and 45% reported experiencing the financial impacts of being a caregiver. Twenty-four percent of respondents said they care for more than one person, while 24% say their health has worsened since caring for their loved one.
Tapping into networks like AlzConnected’s can remind caregivers that they are not alone, help them stay in touch with their own needs, or offer valuable perspectives as they manage the next stages of their loved one’s illness. “We have more than 1,000 new members joining AlzConnected every month,” says Monica Moreno, Senior Director of Care and Support at the Alzheimer’s Association. “It’s a place to share and support each other.”
Educate yourself
As we age, changes normally occur in the brain, Moreno says. At the same time, some changes are outside the normal range and may indicate a more serious diagnosis. Part of Moreno’s work is to raise awareness about Alzheimer’s and dementia so that diagnosis occurs early. “It’s not talked about enough,” Moreno says. “There are a lot of misconceptions about dementia and Alzheimer’s.”
For Moreno, it 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 access to doctors with the appropriate tools for diagnosis, many factors ultimately contribute to building a support system around the disease. “There are 10 warning signs for Alzheimer’s disease,” says Moreno. “If you recognize one, we encourage people to go to the doctor. “Ultimately, families and individuals must be champions for obtaining an early and accurate diagnosis.”
Rely on useful tools
Different organizations offer a wide range of information and research, such as:
Podcasts like Bob’s Last Marathon and Life on Repeat offer candid perspectives on the ins and outs of dementia care.
Educate your circle
The more you can advocate for yourself as a caregiver, the more supported you will feel and the better off your loved one will be, too. Sarah Dulaney, clinical director of the Care Ecosystem at the Memory and Aging Center at the University of California, San Francisco, says this is especially important for the sandwich generation, who often work, raise children and care for aging parents.
It’s also important to know the details of the Family Medical Leave Act. In fact, according to a 2022 paper published by the Rosalynn Carter Institute for Caregivers, a 2019 study showed that nearly 22% of the U.S. workforce identifies as caregivers, with 60 % who work at least 40 hours in addition to assistance. “They have limited time,” Dulaney says. “How can employers help them stay in the workforce so people don’t have to make these 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 as well.
Share your experience with your closest friends and those you trust in your community. It can be very helpful, whether it’s help with occasional childcare or a midweek meal delivered to your home. These small gestures can go a long way in keeping healthcare workers afloat during particularly challenging weeks.
Put yourself first
Taking on responsibility for someone else’s care is stressful. Overall, the Family Caregiver Alliance reports, people who care for others have a higher risk of heart disease, a greater chance of developing serious illness, and a reduced immune response than 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 some things to keep in mind as you build a framework for self-care and overall well-being.
- Schedule regular sessions with a mental health professional or clinical psychologist to support your mental wellbeing. Check your insurance to find someone in your area or ask your primary care doctor for a referral.
- Make exercise, sleep and nutrition a priority.
- Also connect with the people in your life. Carve out time to socialize and do some of the things you enjoy.
- Schedule care breaks, if possible, when you can take a few days to focus on yourself and other important relationships.
Seek expert advice
As the healthcare industry explores ways to improve care for Alzheimer’s and dementia patients, it is also taking into account the expertise of healthcare providers. In August, the Alzheimer’s Association launched the Dementia Care Navigation Roundtable (DCNR), to build consensus among experts on dementia care and support for caregivers navigating the dementia care system.
Through the DCNR, the Alzheimer’s Association has brought together a group of experts who are developing new ways to not only diagnose dementia early, but also guide families in making decisions and accessing appropriate care. Additionally, the pilot project will address various barriers (financial, linguistic, cultural, logistical and educational) to ensure that patients and their caregivers have access to the support they need. “It can be very isolating and carries a stigma,” Moreno says. “For healthcare workers who are already overwhelmed, it can take a huge weight off their shoulders.”
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