Don't travel alone: ​​How to find help caring for a loved one with dementia

Don’t travel alone: ​​How to find help caring for a loved one with dementia

When Mitzie Watson’s mother came to live with her, it didn’t take long to notice that something was wrong.

“She couldn’t identify her medications and needed a lot of guidance to anticipate steps throughout the day,” said Watson, whose experience caring for her mother later motivated her to become a care counselor to the elderly.

After Watson’s mother had a neuropsychological evaluation, it was clear she needed more treatment. “I ended up quitting my job because I was taking up so much time off,” Watson said. “Being an RN, I felt equipped to take care of mom. And I was happy to do it. But I’ll tell you: it’s not easy.

Finding caregiver help

Millions of women end up being the primary caregiver of a loved one with dementia, often unexpectedly. “Over 70 percent of family carers are women and many of them work full-time while also trying to handle caring duty,” she said Karen Sullivan, Ph.D., ABPP, board-certified neuropsychologist and creator of the I CARE FOR YOUR BRAIN program. And, while any kind of care is difficult, caring for older adults with dementia is especially so stressful and difficult.

Dementia, a chronic loss of cognitive abilities, creates a specific set of care needs. As the disease worsens, the burden on the caregiver and the patient’s quality of life increase it tends to get worse. This is especially true with Alzheimer’s disease, Sulivan said, due to anosognosia, a symptom that prevents someone from recognizing their disease and its effects. “That really hits the caregiver and it becomes this incredible stress point,” Sullivan said. “The delusions, paranoia and agitation are so massive, and research shows they affect caregivers even more than memory loss.”

Many family members go as far as they can, dealing with behavioral and mood issues as well as physical care. But it takes a heavy toll. As her mother’s practical care needs increased, Watson sought help from in-home caregivers. “Every moment of his day had to be scheduled. Over time, she went from being basically functional to needing help with showers, getting dressed, doing her hair, brushing her teeth, everything,” Watson said.

Then Covid-19 hit and the health workers stopped coming. The full weight of assistance rested on Watson’s shoulders again.

“I told her I would never let her go anywhere. I wanted to take care of her. But one day I was showering her, with safety measures in place, and she fell. I almost fell on her,” Watson said. “I knew we had to make a different decision.”

Find carers for dementia care at home

There are two main types of care to consider: home services and dementia care facilities. Because dementia gets worse over time, it’s best to think of care as a spectrum or a continuum. Healthcare 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 the loved one and the family members who provide care? Also consider your financial situation. Costs vary widely for home care. Because more specialized care typically costs more, be sure to match your care needs to the appropriate type of care so you don’t pay for a higher level of care than you need. Find out what kind of assistance is covered by the insurance and examine the services provided by your state.

The following types of home care services for dementia are available:

  • Housekeeping help can provide shopping, cleaning and meal preparation.
  • Buddies provide supervision and help with activities.
  • Personal assistance services help with physical needs, such as bathing and exercise.
  • Skilled care provides a healthcare professional to manage your medical needs.

To find a home care provider, use resources like the Alzheimer’s Association 24/7 helplinethe Family Caregiver Alliance correspondence service, home care agencies and by USAging elderly care locator. Support groups and local chapters can also be good sources. Healthcare professionals may be able to recommend qualified care services.

Arrange an interview with potential caregivers and ask about their experience and skills, especially with dementia care. Be specific about what you are looking for. Describe day-to-day scenarios and ask how they would handle each one. When hiring a caregiver privately, do a background check and call references. A service agency should provide background checks and references for you.

Finding the right long-term care facility

Long-term structures are not all created equal. The following types of long-term care are available:

  • Senior housing is a senior living facility with support and services.
  • Assisted living provides help with daily needs for less independent older adults.
  • Nursing homes/long-term care facilities include more intensive levels of care.
  • Alzheimer’s Memory Care Units/Special Care Units (SCUs) offer specialized and structured long-term care.
  • Life plan communities are senior communities with tiered levels of care.

Assisted living may work for someone with dementia in the earlier stages, but memory care, which is designed to safely care for people with dementia, will be needed at some point. 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 over memory care, consider behavioral as much as physical well-being. Some dementia patients are still physically fine, 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 can be available from just one day up to a month or more, can be a good way to experience long-term care for your loved one and get some much-needed time off.

To find the right place for your loved one, start online with these tools that help you locate available properties, review the property’s reputation, and filter for the resources you need:

It’s also worth talking to an aged care adviser, who can help explain Medicaid and Medicare options. Arrange a visit and ask about staff training, staff-resident relationship, on-site health workers, structured activities, safety and security measures, and how staff handle difficult situations with residents.

Choosing dementia care

Knowing which type of care to choose is its own challenge. “There’s no formal mechanism for moving someone across the continuum of care, and that’s an incredible gap,” Sullivan said. “People are suffering. If we had more collaboration and more caring 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 vital to focus on keeping your loved one safe and staying healthy. Those have to be top priorities. “We go through a guilt complex,” Watson said. “And there may be good options that we don’t see for that reason. Everyone’s journey through this is different, but there is help.

From articles on your site
  • Alzheimer’s is not a normal part of aging ›
  • When Dad Can’t Remember: How to Cope With Memory Loss ›
  • Alzheimer’s disease is devastating. It might help to remember that you are not alone. ›
  • Alzheimer’s care is a labor of love ›
  • Are you a caregiver who neglects yourself? You are not alone >
Related articles Around the web