Most families eventually need outside help to relieve some of the burden of around-the-clock care for a person with Alzheimer’s disease. Personal care assistants volunteer or paid may be available through local social service agencies. Adult day-care facilities are becoming increasingly common. Meal delivery, shopping assistance, or respite care may be available as well.
Providing the total care required by a person with late-stage Alzheimer’s disease can become an overwhelming burden for a family, even with outside help. At this stage, many families consider nursing home care. This decision often is one of the most difficult for the family, since it is often seen as an abandonment of the loved one and a failure of the family. Careful counselling with a sympathetic physician, clergy, or other trusted adviser might ease the difficulties of this transition. Selecting a nursing home may require a difficult balancing of cost, services, location, and availability. Keeping the entire family involved in the decision may help prevent further stress from developing later on.
Several federal government programs may ease the cost of caring for a person with Alzheimer’s, including Social Security Disability, Medicare, and Supplemental Security Income. Each of these programs may provide some assistance for care, medication, or other costs, but none of them will pay for nursing home care indefinitely.
Home Care, Adult Daycare, Nursing Home:
Adult daycare centres as well as special care units in nursing homes often provide specialised care for dementia patients. Adult daycare centres offer supervision, recreation, meals, and limited health care to participants, as well as providing respite for caregivers. In addition, home care can provide one-on-one support and care in the home allowing for more individualised attention that is needed as the disease progresses.
Since dementia impairs normal communication due to changes in receptive and expressive language, as well as the ability to plan and problem solve, agitated behaviour is often a form of communication for the person with dementia and actively searching for a potential cause, such as pain, physical illness, or overstimulation can be helpful in reducing agitation
"It’s the nature of Alzheimer’s disease to progressively get worse as memory deteriorates. In the advanced stages of Alzheimer’s, round-the-clock care is usually needed. Thinking ahead to these possibilities can help make decisions easier. Every family is different but knowing your options can help you make an informed decision. To find links to organisations in your area that may be able to help, see Resources and References below.
There are several options for extending care at home:
In-home help refers to caregivers that you can hire to provide assistance for your loved one. In-home help ranges from help a few hours a week to live-in help, depending on your needs. You’ll want to evaluate what sort of tasks you’d like help with, how much you can afford to spend, and what hours you need. Getting help with basic tasks like housekeeping, shopping, or other errands can also help you provide more focused care for your loved one.
Day programs, also called adult day care, are programs that typically operate weekdays and offer a variety of activities and socialisation opportunities. They also provide the chance for the caregiver to continue working or attend to other needs. There are some programs that specialise in dementia care.
Respite care. Respite care is short-term care where your loved one stays in a facility temporarily. This gives the caregiver a block of time to rest, travel or attend to other things.
Is it time to move?
As Alzheimer’s progresses, the physical and mental demands on the caregiver can gradually become overwhelming. Physical tasks like bathing, dressing, and assistance with toileting may require total assistance. The level of supervision required also increases with time. At some point, you won’t be able to leave your loved one alone. Nighttime behaviours may not allow a caregiver to sleep, and with some patients, belligerent or aggressive behaviours may exceed a caregiver’s ability to cope or feel safe.
Every situation is different. Sometimes the gap can be bridged by bringing in additional assistance, such as in-home help or other family members. However, it is not a sign of weakness if moving to a facility seems like the best plan of care. If the health and safety of either the caregiver or the person with Alzheimer’s is being compromised, it’s definitely time to consider other options. If the person with Alzheimer’s is living alone, or the primary caregiver has health problems, this option may need to be considered sooner rather than later. It’s also important to consider whether you are able to balance your other obligations, either financial or to other family members. Will you be able to afford appropriate in-home coverage if you can’t continue caregiving? Talk to your loved one’s medical care team for their perspective as well.
EVALUATING AN ASSISTED LIVING FACILITY OR NURSING HOME
If the best choice is to move the Alzheimer’s patient to a facility, it doesn’t mean you will no longer be involved in their care. Quite the opposite, you are making sure your loved one gets the care he or she needs. You can still visit regularly and stay involved in the person’s care. Even if you are not yet ready to make that step, doing some initial legwork might save a lot of heartache in the case of a crisis where you have to move quickly. The first step is finding the right place for your loved one.
Choosing a facility
There are two main types of facilities that you will most likely have to evaluate: an assisted living facility or a nursing home.
Assisted living is an option for those who need help with some activities of daily living. Some facilities provide minor help with medications as well. Staff is available twenty-four hours a day, but you will want to make sure they have experience handling residents with Alzheimer’s disease. Also be clear about what stage your loved may need to move to a higher level of care.
Nursing homes provide assistance in both activities of daily living and a high level of medical care. A licensed physician supervises each resident’s care and a nurse or other medical professional is almost always on the premises. Skilled nursing care providers and medical professionals such as occupational or physical therapists are also available.
How do I choose a facility?
Once you’ve determined the appropriate level of care, you’ll want to visit the facility—both announced and unannounced—to meet with the staff and otherwise evaluate the home. You will also want to evaluate the facility based on their experience with Alzheimer’s residents. For example:
How many residents do they have with Alzheimer’s disease?
Is there a designated area, often called a special care unit (SKU), for residents with dementia?
How are behavioural problems, such as wandering, handled?
How does staff assess unexpressed pain—if the Alzheimer’s resident has pain but cannot communicate it?
How do they handle meals and ensure adequate hydration, since the person can often forget to eat or drink?
What is staff turnover like? Will there be continuity in staff for the resident, or is staff frequently rotated?"