Alzheimer’s disease is a chronic, progressive illness and is the most common cause of dementia in older individuals. It is characterized by progressive intellectual deterioration together with declining activities of daily living. Most people with Alzheimer’s disease also exhibit psychiatric symptoms and behavioral changes.
As with other chronically ill people, those with Alzheimer’s disease often need some type of chronic care. Chronic care differs from the acute care people receive in hospitals and doctor’s offices. Chronic care is characterized by daily personal-care assistance, supervision, help with taking medications, meal preparation, companionship, shopping, cleaning and doing the laundry, for example.
Chronic care in America varies from community to community. It includes community-based and institutional care providers as well as state, federal, and private funding sources. Many Alzheimer’s patients are served by this system — in their homes, in special “dementia-care” programs, in adult day care facilities and in nursing homes. The health care professionals working in this system are typically social workers, nurses, therapists and case managers.
Alzheimer’s disease is fast becoming the most prevalent and the most disabling chronic illness in America. 2-3% of persons aged 65 show signs of the disease, while 25 – 50% of persons aged 85 have symptoms of Alzheimer’s and an even greater number have some of the pathological hallmarks of the disease without the characteristic symptoms. As our chronic care system strains to capacity, people with Alzheimer’s disease and their families need to understand how they can more effectively to ensure the quality of their loved ones’ care. Here are a few tips to help a person care and plan for someone with Alzheimer’s disease.
Creating Advance Directives
Alzheimer’s disease is a dementing illness. As it progresses, people will lose their memory, their ability to reason, and the ability to understand the consequences of their decisions. Once an individual with Alzheimer’s disease has lost competence, it is too late to designate the person he or she wants to make his or her health care, financial and estate-planning decisions.
This is why choosing a decision-maker in advance of incapacity can be critical to maintaining the quality of life for a loved one with Alzheimer’s disease, as well as for his or her family. It is one of the best arguments supporting early diagnosis, since most people in the early stages of Alzheimer’s disease can execute advance directives before their illness has progressed too far.
There are five advance directives to be concerned about:
- Power of attorney
- Health care proxy
- A will
- A living will
- Do Not Resuscitate (DNR) order
For individuals with Alzheimer’s disease, empowering family members or trusted friends to make health care decisions (health care proxy) and to do estate and financial planning (power of attorney) ensures that the caregiving effort won’t freeze up due to a lack of resources or the absence of a decision maker. The proper execution of advance directives by an estate-planning attorney is often a critical component of any Alzheimer’s care plan.
Taking an Estate Inventory
Before charting the course for a loved one’s long-term care, you should first determine where you and the person with Alzheimer’s disease are. An estate inventory is a snapshot of the resources at one’s disposal that may be needed to subsidize caregiving. There are six long-term care resources:
- Health insurance
- Income and assets
- Community resources
- Family and friends (themselves a resource for caregiving)
- The home environment
- The person with Alzheimer’s disease’s capacity for self-care
An estate inventory defines three of these resources — health insurance, income and assets, and community resource eligibility. The other three resources are established by the Care Assessment, the third step in the care planning process (see below).
A person cannot efficiently plan or manage long-term care without knowing how much care they can pay for themselves or how much can be subsidized by the community (local, state, federal programs). A clear snapshot of the person’s income from fixed sources (Social Security, 401(k), pension and other retirement income), of their assets (savings, investments, equity in the home, etc.), and what their health insurance will and won’t cover (including long-term care insurance) must be done before you can decide on caregiving arrangements for someone with Alzheimer’s disease.
Creating a Care Assessment
Both the amount and the type of care needed by a person with Alzheimer’s disease will change over time. In the early stages, periodic supervision and homemaking (shopping, cleaning, and laundry) may be all that’s needed. The level of care may gradually increase to include higher levels of supervision, personal care assistance, behavior management, or even placement in a specialized dementia-care facility or nursing home.
A Care Assessment for a person with Alzheimer’s disease examines what the patient needs, how much care his or her family can provide, how the home is configured, and what the person is capable of. The assessment is best performed by family members or loved ones working in consultation with mental health and health care professionals skilled in Alzheimer’s care. Since many people with Alzheimer’s disease are still living in their homes — either with spouses, with children or alone — the best place to turn for a care assessment is often a home care agency.
A skilled assessment by a home care nurse, preferably with a dementia-care specialty, done in tandem with a home health care social worker, can often be ordered by a physician and paid for by Medicare. But if Medicare won’t cover it, the patient or family may have to pay. Spending a few hundred dollars for the advice of a seasoned home care professional is nearly always money well spent in determining the feasibility of home care, how it will be paid for and in setting limits for patients and caregivers alike. Families may also call upon independent care managers or their local elder service agencies (Area Agencies on Aging or AAA’s) to perform the care and needs assessment.
Defining the Options
With advance directives in place, resources organized, and the person’s care assessed, the actual planning can begin. It is best to take a short-term and a separate long-term approach to planning. Immediate needs must be met while plans for likely future needs are constructed.
It is also best not to confuse planning with wishful thinking. The most effective approach is to hope for the best, but plan for the worst. Alzheimer’s disease is progressively debilitating. Planning for the worst-case scenario acknowledges that nursing home placement may be required at some point in time (costing as much as $5,000+ per month in some areas) and that home care could become even more expensive. Realistic planning for the potentially high cost of long-term care forces the family to find the estate-planning and community-support solutions that can preserve the person’s independence as well as his or her savings (which may be needed for the caregiving effort, for the needs of a well spouse or a family’s future).
Most care-planning options turn on two primary factors: cost and living environment. Mapping out a care plan often requires that a family compromises between competing priorities. Quality of care is usually the top priority and it is usually defined in terms of the venue of care. The home is most often preferred, but resource and caregiver limitations may force a compromise choice for placement in a more restrictive setting.
There are many residential choices for people with Alzheimer’s disease. Residential choices will be governed first by concern for the individual’s safety in daily living. Safety is measured by actual physical risk for injury and also by behavioral and emotional stability. These risks are reduced by incrementally higher levels of supervision, personal care assistance, and restrictions on freedom of movement. Home care for a person with Alzheimer’s disease may not work if he or she cooks unsafely, smokes unsafely, or tends to wander. In such cases, the family may be forced to hire 24-hour supervision, or provide it themselves. And even if this is affordable, it may not be the best choice for all concerned.
The next least-restrictive setting may be an assisted living facility with some private-duty care. If a person’s cognitive function and self-care ability has declined to where he or she requires more supervision, a rest home or specialized dementia-care facility may work-still less restrictive (and less expensive) than a nursing home, but possibly safer and often less costly than 24-hour home care. And community programs may also subsidize all of these options for income- and asset-eligible patients.
Behavior management often makes planning for Alzheimer’s care particularly difficult. But at the end stage of the illness, behavior management may become less of a challenge than basic personal care and intermittent nursing services. Care planning must anticipate a sequence of living arrangements that may, ultimately, result in a return to the home. Many people with Alzheimer’s disease become home care patients once again, for the final stage of the illness.
Long-term, chronic care can be likened to an expedition. As with all good expeditions, planning is a prerequisite to success. For a plan to work it must be adaptable and it must be based on good information. The more knowledge one has about the nature and course of Alzheimer’s disease, the better. Combining knowledge with the basics of long-term care planning greatly increases the likelihood that a loved one will receive the best care available and that s family’s journey will be as smooth as possible.