What Family Members Can Do
Caring For The Caregiver
Families are the largest component of care for people with dementia, and home caregivers experience considerable stress. The health of the caregiver is essential and must not be ignored.
Research has shown that the health of the caregiver directly affects the health of the patient, the frequency of admissions to the hospital and how early he or she needs to go into care. Caregivers must seek help early and use available support systems when the need arises. To seek help is not a sign of weakness or failure in coping. It is the right thing to do.
To avoid caregiver "burnout," caregivers should be monitored regularly by a health-care provider. Prompt attention to signs of depression or exhaustion will help both the caregiver and the person being cared for.
Planning For The Future
People with dementia and their family members should try to put plans in place for the future. This will make future transitions easier and will ensure that your wishes are carried out. This should not be overwhelming — think of it as security for the future. Many professionals can guide and assist you in making these preparations.
Issues to consider include:
More than half of all people diagnosed with Alzheimer's continue to live in home settings, and 80 percent to 90 percent of these rely on family and friends for care.
However, home-care services are available. Home-care services can be nonmedical or medical. Nonmedical home-care services can include a homemaker, meals on wheels, shopping, an escort and a companion. For eligible persons, these services may be subsidized by the state. Volunteers donate some of these services. And some services must be privately purchased.
Medical home-care services include nursing, home health aide, occupational therapy, physical therapy and social work. Most medical services are covered by the state or by private insurance and are usually prescribed after hospitalization.
Social day care, which provides nonmedical care, and adult day care, which provides medical care, offer supervision and care when family and friends are not available.
Respite care is indicated when a person with dementia can no longer be left alone. Respite means "time-out." People define respite care in diverse ways. For some, it is an opportunity to be cared for — patient respite. For others, it is a bridge game, a chance to shop or visit without the demands of a restless patient — caregiver respite. Respite can be provided by family members, friends or neighbors, by trained help, in day centers, in private homes or in residential or institutional settings. Most patients will need respite care in different forms as their illnesses progress.
At some point, most caregivers and patients must face the reality of care outside the home. Residential options for people with dementia include:
- Independent living facilities — facilities that provide food, house cleaning and social events
- Assisted living facilities — facilities that provide all of the services provided by independent living facilities, plus assistance with personal care (bathing, dressing and medication reminder)
- Nursing homes — facilities that provide skilled nursing care and rehabilitation
Another housing choice for a person with dementia is a continuing-care residential community. This community consists of facilities that offer all of the above residential options; residents can move between the different levels of care, as their care needs change.
Hospice care is appropriate when the primary goal of care is comfort, not survival. Unfortunately, relatively few people with dementia participate in hospice programs. This is partly because family members or other caregivers need to enroll the patient into the program, and they may be reluctant to select an option that represents the end of the care provided by them. If you would like hospice care, then be sure to put this in your advance directive, thereby making the decision easier for loved ones.
A health care proxy is the person you choose to make medical decisions on your behalf should the time come when you are not able. You should choose your proxy carefully and while you still have good cognitive function.
An advance directive is a written document that details your wishes regarding your future medical treatment. Specifically, it should detail your wishes concerning:
- Cardiac resuscitation
- Artificial life support
- Tube feeding
- Hospitalization for life-threatening conditions
- The use of antibiotics for life-threatening infections
Some patients find it useful to meet with their caregivers and medical team to discuss their wishes. Unfortunately, too many patients do not take the time to create an advance directive, putting decision-related strain on loved ones. So take the time to create this document. You can make changes to your advance directive at any time.
Although an advance directive does not require any legal input, you must include your name (printed), your signature and the date for the document to be legally binding. Also, laws vary from state to state. Therefore, it is important to seek advice about your own state's law.
There are several legal issues for the person with dementia to address, including a will, a living will and power of attorney. A will determines who manages your estate in the event of your death. A living will, similar to an advance directive, outlines your wishes regarding your medical treatment, such as artificial life support and resuscitation orders. Power of attorney is the person you designate to make legal and medical decisions on your behalf when you are no longer able. These all-important issues should be given much thought and consideration. Reviewing your choices with an attorney will help to guarantee that your choices are legally binding.
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