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

Every post AlzConnecteda message board for individuals caring for loved ones and Alzheimer’s and dementia, heartfelt and true. (Is it normal for an Alzheimer’s patient to shake themselves in the mirror? What is the best way to deal with fantasy scams? Is there a checklist to keep the home environment safe for a dementia patient? It’s important to vent a little; I am so tired mentally and physically and it seems like I haven’t had a moment to myself in years.)

The organization, created by the Alzheimer’s Association and part of a platform to provide support around the disease and the people it affects, has thousands. Some are from new spouses and relatives, some are questions about different aspects of memory, and some ask for guidance on how to manage memory care or how to take care of yourself while caring for someone else. These are the people who are experiencing the biggest changes Alzheimer’s and dementia undoubtedly have on patients and their families. And, for those who haven’t experienced dementia or Alzheimer’s, there’s no real way to know what they don’t know and what lies ahead until they experience it every day.

Now, more 6 million Americans are living with them Alzheimer’s disease. By 2050, this number is expected to reach 13 million. The amount of invisible and often unpaid work involved in managing and caring for these people is enormous. In fact, the Alzheimer’s Association reports that in 2022 alone, approximately 18 billion hours (worth approximately $339.5 billion) will be spent unpaid by people caring for their loved ones. Spouses, children, friends and family members who are responsible for caring for a loved one often struggle to build their support group.

The invisible work of caring

Caregivers are often in charge of their own lives on top of their loved one’s dementia or Alzheimer’s care. This is especially important for older children, who may still have children to raise and care for on top of work. The National Alliance for Caregiving (NAC) and AARP reported in 2020 that approximately 61% of caregivers are employed and 45% said they have experienced financial hardship as a result of being a caregiver. Twenty-four percent of respondents said they cared for more than one person, while 24% said their health has declined since taking care of their loved one.

Joining a network like the one at AlzConnected can remind caregivers that they’re not alone, help them connect with their needs, or provide valuable advice as they navigate the later stages of their loved one’s illness. “We have over 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 occur in the brain, says Moreno. At the same time, some changes do not fall within the scope and may indicate a serious illness. Part of Moreno’s work is to promote awareness of Alzheimer’s and dementia so early detection occurs. “It’s not talked about enough,” Moreno says. “There is a lot of misunderstanding about dementia and Alzheimer’s.”

Moreno is clear that education and early detection are critical to preparing for the next wave of Alzheimer’s and dementia patients. From open communication within families to access to doctors and the right diagnostic equipment, many things can create a supportive environment around the disease. “There are 10 warning signs of Alzheimer’s disease,” says Moreno. “If you notice one, we encourage people to go to the doctor. “At the end of the day, families and individuals need to be experts in getting early and accurate diagnoses.”

Follow the useful tools

Several organizations provide information and research, such as:

Podcasts like Bob’s Last Marathon and Life on Repeat give clear ideas on the ins and outs of dementia care.

Educate your circle

When you can advocate for yourself as a caregiver, you will feel more supported and your loved one will feel better. Sarah Dulaney, Clinical Director at the Care Ecosystem at the Memory and Aging Center at the University of California, San Francisco, says this is especially important for sandwich makers, who work long hours. raising children and caring for elderly parents.

It is also important to know the ins and outs Family Medical Leave Act. In fact, according to 2022 paper released by the Rosalynn Carter Institute for Caregivers, a 2019 study showed that about 22% of US workers identified as caregivers, 60% work at least 40 hours on top of being cared for. “They have little time,” says Dulaney. “How can employers help them keep working so that people don’t make such decisions?” It is important to talk to your employer about your situation and have an open way of communicating so that in the event of conflict or danger, your employer has the opportunity to help you.

Share your experiences with your best friends and those you trust in your community. It can be very helpful, whether it’s providing occasional childcare or a midweek meal delivered to your home. These little hands can go a long way in keeping caregivers on track during busy weeks.

Put yourself first

Assuming the responsibility of caring for another person is difficult. Overall, the reports a Family Care Agreement, caregivers have an increased risk of heart disease, an increased risk of chronic disease, and a weakened immune system compared to non-caregivers. It may not make sense 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 when creating a plan for self-care and wellness.

  • Schedule regular sessions with a psychologist or psychiatrist to help you stay healthy. Work through your insurance to find one in your area, or ask your general practitioner for a referral.
  • Make exercise, sleep and eating the right foods the most important thing.
  • Reconnect with the people in your life. Find time to socialize and do something you enjoy.
  • Schedule a caregiving break, if possible, where you can take a few days to think about yourself and other important relationships.

Seek professional advice

As healthcare companies search for ways to improve care for Alzheimer’s and dementia patients, they are also considering the caregivers’ experience. In August, the Alzheimer’s Association launched Dementia Care Navigation Roundtable (DCNR), to create collaboration between dementia care professionals and support caregivers managing the dementia care system.

Through DCNR, the Alzheimer’s Association has assembled a team of experts who are developing new ways to detect dementia early and guide families in making decisions and finding the right treatment. In addition, the pilot will overcome various barriers (economic, linguistic, cultural, operational, and educational) to ensure that patients and their caregivers have access to the care they need. “It can be isolating and it can be stigmatizing,” Moreno says. “For carers who are already overburdened it can take a huge burden off their shoulders.”

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