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Caring for someone you love who has dementia can be a heavy burden, but you don’t have to bear it alone. Here are some tips to find the caregiving help you need.
When Mitzie Watson’s mother came to live with her, it didn’t take long to notice something was off.
“She couldn’t identify her medications, and she needed a lot of direction with anticipating steps throughout the day,” said Watson, whose experience caring for her mother later motivated her to become a senior care advisor.
After Watson’s mother had a neuropsychological evaluation, it was clear she would need more care. “I ended up leaving my job because I was taking so much time off,” Watson said. “Being an R.N., I felt equipped to take care of Mom. And I was glad to do it. But I will tell you: It’s not easy.”
Millions of women end up as the primary caregiver for a loved one with dementia, often unexpectedly. “Over 70% of family caregivers are women, and many of them are working full-time while also trying to handle caregiving duty,” said Karen Sullivan, Ph.D., ABPP, board-certified neuropsychologist and creator of the I CARE FOR YOUR BRAIN program. And, while any type of caregiving is hard, caring for older adults with dementia is particularly stressful and difficult.
Dementia, a chronic loss of cognitive skills, creates a specific set of needs for care. As the disease gets worse, the burden on the caregiver increases and the patient’s quality of life tends to worsen. This is particularly true with Alzheimer’s disease, Sulivan said, because of anosognosia, a symptom that keeps someone from recognizing their own illness and its effects. “That really affects the caregiver, and becomes this incredible point of stress,” Sullivan said. “Delusions, paranoia and agitation are so huge, and research shows these affect caregivers even more than the memory loss.”
Many family members push through as long as they can, dealing with behavioral and mood issues as well as physical care. But it takes a heavy toll. As her mom’s hands-on care needs increased, Watson sought help from in-home caregivers. “Every moment of her day had to be scheduled. Over time, she went from basically functional to needing help with showers, dressing, grooming, brushing teeth, everything,” Watson said.
Then Covid-19 hit, and the caregivers quit coming. The entire weight of caregiving was back on Watson’s shoulders.
“I told her I'd never have her go somewhere. I wanted to take care of her. But I was showering her one day, with safety measures in place, and she fell down. I almost fell on top of her,” Watson said. “I knew we had to make a different decision.”
There are two primary types of care to consider: in-home services and dementia care facilities. Since dementia gets worse over time, it’s best to think of caregiving as a spectrum or continuum. Caregiving help that works now may not be the best option in six months.
Start by looking at the current situation. What are the greatest needs for both your loved one and for family members providing care? Consider the financial situation, as well. Costs range widely for in-home care. Since more specialized care typically costs more, be sure to match care needs to the appropriate type of caregiving so you don’t pay for a higher level of care than you need. Find out what type of care is covered by insurance, and look into services provided by your state.
The following types of in-home dementia care services are available:
To find an in-home caregiver, use resources such as the Alzheimer’s Association 24/7 Helpline, the Family Caregiver Alliance’s matching service, home care agencies and USAging’s eldercare locator. Support groups and local chapters can also be a good source. Healthcare providers may be able to recommend skilled care services.
Set up an interview with potential caregivers and ask about their experience and skills, specifically with dementia care. Be specific about what you’re looking for. Describe daily scenarios and ask how they would handle each one. When hiring a caregiver privately, conduct a background check and call references. A caregiving agency should provide background checks and references for you.
Long-term facilities are not all the same. The following types of long-term care are available:
Assisted living may work for someone with dementia in the earlier stages, but at some point, memory care — which is designed to safely care for people with dementia — will be needed. Unless it’s memory care assisted living, staff members may not be trained in how to care for someone with dementia.
When choosing assisted living vs. memory care, consider the behavioral aspect as much as physical wellness. Some dementia patients are still physically well, but their cognition no longer allows for independence. If possible, Sullivan recommends finding a place that provides both, so the transition to memory care is easier for your loved one. Respite care, which may be available from a single day up to a month or more, can be a good way to try out long-term care for your loved one and have some much-needed time off.
To find the right place for your loved one, start online with these tools that help you locate available facilities, review facility reputation and filter for needed resources:
It’s also worth talking to a senior care advisor, who can help explain Medicaid and Medicare options. Set up a visit and ask about staff training, the staff-to-resident ratio, medical providers on-site, structured activities, security and safety measures, and how staff handle difficult situations with the residents.
Knowing what type of care to choose is its own challenge. “There’s no formal mechanism for moving someone through the care continuum, and it’s an incredible gap,” Sullivan said. “People are suffering. If we had more collaboration and more care partnerships, I think that would change the whole experience.” She recommends working with a neuropsychologist who will consider the mental, emotional and physical aspects of care.
To find the best care for a loved one with dementia, it’s key to focus on keeping your loved one safe and keeping yourself healthy. Those have to be the highest priorities. “We go through a guilt complex,” Watson said. “And there can be good options we don’t see because of that. Everyone’s journey through this is different, but there is help.”
