Alzheimer’s Disease and the Family Caregiver: Deciding When to Make a Move

Consider the statistics. Every 65 seconds, someone develops Alzheimer’s disease, an irreversible, progressive brain disease that slowly destroys memory and thinking skills. Today, 5.7 million Americans are living with Alzheimer’s. By 2050, this number is projected to more than double, rising to nearly 14 million.

Much of the responsibility of caring for people with Alzheimer’s falls on the shoulders of family members. A total of 16.1 million Americans provide unpaid care for people with Alzheimer’s. Family caretakers can face a cascade of challenges – emotional, physical, and financial.

Coping with the stress  

“Alzheimer’s caregivers typically experience a range of emotions,” says Marie Webster, director of nursing at Williamsburg Village Healthcare Complex, a skilled nursing center in DeSoto, Texas, and one of seven memory care communities operated by StoneGate Senior Living. “Along with stress and depression, they may feel anger with their loved one and then guilt for being angry.

“The result is often burnout, or what we call compassion fatigue. This is when the caregiver is so preoccupied with the suffering of the person they’re helping that they experience their own trauma. It’s not uncommon for caregivers to develop issues with their health, from insomnia to a weakened immune system. They can also face financial challenges if, for example, they need to modify their home significantly to accommodate their loved one’s changing needs, hire in-home help, or leave their job to provide full-time care.”

Connecting with respite care

One antidote to compassion fatigue is respite care. This program gives caregivers a short-term break while professionals trained to care for the person with Alzheimer’s take on the caregiving role. Respite care can be provided in the home, at special daycare centers, or in a skilled nursing or assisted living facility that offers overnight stays.

“You can’t care for anyone else well if you’re not caring for yourself,” Webster says. “Taking time to relax and rejuvenate can provide a renewed perspective in your caretaking role.”

Considering a move to a care community

Family caregivers of a loved one with Alzheimer’s often realize they can’t provide the level of care required at home. The strain, risks, and responsibilities may have become too much, prompting the difficult decision to move a loved one to a memory care facility.

“As a person’s Alzheimer’s progresses, they need to be in a safe environment, where care is available 24 hours a day,” Webster says. “If you’re considering a memory care facility, it’s important to gather information ahead of time and start the search early on. If you wait too long, your loved one’s memory may be so impaired that their new residence will never feel like home.

“Take time to tour potential communities. Ask questions of staff. Visit with other families whose loved one resides at the facility. Observe how the residents appear. In determining if a community is the right fit for your loved one, there are so many considerations beyond cost.”

Confirming your choice

Webster offers 10 guidelines for evaluating residential community options for a loved one with Alzheimer’s:

  1. What level of care and personal assistance is provided?
  2. How do staff ensure the stability of a routine while maximizing resident autonomy?
  3. How does the physical structure of the facility support residents with memory loss and physical limitations? How is the community secured?
  4. What is the ratio of staff to residents?
  5. What type of specialized training and continuing education has
    the staff received?
  6. How do staff assess and monitor disease progression?
  7. How will staff communicate with you about your loved one’s care?
  8. What is the meal experience like? Are special dietary needs accommodated, such as pureed food for those with swallowing challenges?
  9. What activities are offered to keep your loved one physically, mentally, and socially active?
  10. Does the facility take a person-centered, strength-based approach to Alzheimer’s?

“When your loved one moves into a memory care community, you’ll likely find their quality of life improves and yours does, too,” Webster says. “With the assurance that your loved one is well taken care of, you can focus on spending time with them – not as a full-time caretaker, but as a devoted family member whose main job is providing comfort, companionship, and love.”