Alzheimer's blog

Long term care: Plan ahead to know your options

By Angela Lunde April 28, 2010

Thanks for the recent discussion around the topic of long term care. I completely agree that it's hard to know when or where to start looking. I understand the enormous financial barriers, and that finding adequately staffed and high quality residential care challenging. There are no easy solutions for families. But here are examples of types of care, some thoughts to consider, and resources for you to explore.

Changes that occur over the course of Alzheimer's disease make it almost certain that additional care, including residential care, will be needed. The decision is often heart-wrenching and met with uncertainly, fear and guilt on the part of the family or caregivers involved in the process.

Having said that, I can't stress enough the importance of doing your homework as early as possible (well before your loved one needs long term care) so you can take time to understand the options available. Even if your loved one is in denial, family members can begin to investigate on their own. As the disease progresses and the time to move a loved one is near, it's most often the family (children) that influence the decision the most.

So what exactly is long term care in the context of a person with dementia such as Alzheimer's disease?  There are generally 2 types of residential care available: assisted living and nursing homes.

  • Assisted living is any group of residential programs not licensed as a nursing home. Definitions of assisted living and the specific regulations differ from state to state. The spectrum of assisted-living services includes options such as congregate housing, residential-care facilities including adult foster care homes and memory care assisted living. Assisted living residences generally provide 24-hour staff, recreational activities, meals, housekeeping, laundry and transportation.
  • Memory care assisted living is essentially a step beyond basic assisted living. Residents are in a supervised, sometimes secured locked facility. Meals are provided; activities of daily living including medications are managed by care staff. Memory care assisted living is social, activity-based model of care (vs. medical model of care found in nursing homes). Most persons with dementia can live in a memory care assisted living facility throughout their disease unless there are medical conditions that require the skilled nursing services offered in nursing homes.
  • Foster care or board and care homes provide meals and help with some daily activities (such as money management, scheduling transportation, reminders to take medication, laundry and housekeeping). Board and care homes may also be called adult foster care, elder care homes or residential care homes. Some foster homes are also dementia specific and will provide round the clock supervision, assistance with daily care and social activities.

Although some facilities accept state funding (Medicaid), assisted living is ordinarily paid for privately

  • Nursing homes provide a full range of skilled care needs, including acute care and long-term care. There are many persons with dementia who live in nursing homes because of coexisting medical conditions or due to insurance, proximity to family, or other logistical reasons. Some nursing homes offer alzheimer special care or memory care units to better meet the special needs of residents with dementia. Special care units are usually a floor or a unit inside a nursing home.

Currently 27 states have legislation requiring nursing homes and assisted living residences to tell exactly what specialized services including memory care they provide. This includes providing written information about trained staff, specialized activities, ability of staff to care for residents with behavioral needs, and what fees they charge.

What kind of care is best for you or your loved one? The Alzheimer's Association CareFinder can be a useful tool and will walk you through the following:

  • what types of care are available
  • how to recognize good care
  • what the Alzheimer's Association recommends
  • how to decide what care you need
  • how to make sure you've found good care

You can find a link to CareFinder on the Resources tab above.

Once again, there are no easy answers, but another valuable resource I must mention is a local support group. Support group participants can share their firsthand experiences with long term care and offer invaluable insight into their journey.  More importantly, they can provide the emotional support families need as they navigate this uncharted and unrequested territory.

Apr. 28, 2010