Alzheimer's Disease: Support and Education
Today, it is estimated that about five million* Americans suffer from Alzheimer's disease, and about 360,000 people are newly diagnosed every year. Alzheimer's affects about 10 percent of people over the age of 65, and the prevalence doubles roughly every 10 years afterwards. Half of the population ages 85 and up may have Alzheimer's.
As the population of the U.S. ages the number of people with Alzheimer's will continue to rise. At current rates, experts believe that as many as 16 million Americans will have the disease by the year 2050.
The financial costs of caring for someone with Alzheimer's disease can be overwhelming and is estimated to be about $50,000 per year in direct medical expenses. Multiplied by five million (the estimated number of people with Alzheimer's), total direct costs in the U.S. exceed $250 billion per year. When indirect costs such as lost wages and decreased productivity of sufferers and their caregivers are included, the annual costs of Alzheimer's rise astronomically - high enough to potentially bankrupt the nation's healthcare system.
Alzheimer's advances in stages, progressing from mild forgetfulness and cognitive impairment to widespread loss of mental abilities. In the advanced stages people become dependent on others for every aspect of their care. The time course of the disease varies by individual, ranging from five to 20 years. The most common cause of death is infection.The progressive loss of cognitive function in Alzheimer's disease is accompanied by pathologic (disease-associated) changes in the brain. One of these is the formation of plaques in the space between nerve cells comprised of a brain protein called beta amyloid. Another protein called tau, which normally channels chemical messages inside nerve cells, deforms and collapses into neurofibrillary tangles that appear like twisted bits of thread inside nerve cells.
As the disease progresses nerve cells in several brain areas shrink and die; including cells that normally produce critical neurotransmitters, the chemical messengers that relay brain signals from one nerve cell (neuron ) to another. Acetylcholine is a neurotransmitter that is deficient in people with Alzheimer's. As nerve cells continue to die, the brain itself shrinks and the wrinkles along its surface become smoother.
Scientists have made significant progress in understanding the possible causes of Alzheimer's disease, but many questions remain. It is likely that both inherited and environmental factors interact in complex, poorly understood ways to cause the disease.
When a person with dementia finds that their mental abilities are declining, they often feel vulnerable and in need of reassurance and support. The people closest to them - including their carers, friends and family - need to do everything they can to help the person to retain their sense of identity and feelings of self-worth.
Just as each individual with Alzheimer's disease progresses differently, the caregiving experience varies widely from person to person. However, there are strategies that can help make the journey as rewarding as it is challenging. Learning all you can about what is happening and what to expect will not only help your loved one, but it's also the first step towards protecting your own mental and physical health.
Through training, caregivers can learn how to manage challenging behaviors, improve communication skills and keep the person with Alzheimer's safe. Research shows that caregivers experience lower stress and better health when they learn skills through caregiver training and participate in a support group, either online or in person: participation in these groups can allow caregivers to care for their loved one at home longer.
An excellent resource for locating support groups near you may be found through The Alzheimers Association.
- The more you know about AD, the easier it will be for you as a caregiver: connecting with other caregivers in your area can be an excellent way to learn about and make sense of your own experience. One of the most difficult things to learn is to differentiate between the disease and your loved one. Particularly in the early stage, behavior that is upsetting to the caregiver is usually a result of the disease process rather than an attempt by the person with AD to hurt or frustrate the caregiver.
- A diagnosis of AD can be a heart-wrenching experience for both the person diagnosed and the caregiver. The person with AD may not remember or may not admit to having the disease or ever being told they had Alzheimer's. Trying to convince them otherwise is fruitless and frustrating for the caregiver. The caregiver needs to get appropriate emotional support through counseling, a support group or other family members. The goal is to establish a system of emotional support that will grow and change with you as your caregiving role and the emotional challenges change. Depression is common in caregivers of people with AD and should be addressed.
- As the disease progresses, it will be harder for the person with AD to fulfill the roles they have typically played in the family. For example, if he or she was the only driver in the family, it will be important for family members to find alternative means of transportation. If the person with AD customarily prepared all of the meals, now is the time for the caregiver to begin learning how to cook. If the person with AD was in charge of household finances, someone else will need to assume this role. Focusing on these issues early will allow the person with AD to help the caregiver prepare for the future.
- AD can be a costly disease. It is important to begin mapping out strategies for meeting the increasing financial demands placed on the family as the disease progresses. Financial planning should include reviewing your insurance coverage, e.g., health, disability, long-term care. Be aware that Medicare does not pay for long-term care or custodial care; Medicaid, however, does provide coverage for those who qualify. Health insurance counseling is available free to seniors. To locate help in your community, call the Eldercare Locator at (800) 677-1116 or HICAP at (800) 434-0222.
We often use intuition to help us decide what to do. Unfortunately, dealing with Alzheimer's disease and other dementias is counter-intuitive; i.e., often the right thing to do is exactly opposite of what seems like the right thing to do.
- People caring for loved ones with AD frequently feel isolated, and feelings of grief and loss surface as the person they are caring for changes. Getting emotional support from professionals, family, friends and/or a support group as well as taking periodic breaks from the responsibilities of caregiving is crucial to the mental and physical health of caregivers. Be sure to speak to your physician if you feel depressed or anxious.
Caregivers need a regular break or "respite" from providing care and assistance. Respite care includes in-home help (another family member, a neighbor, a hired or volunteer caregiver), and out of home help (adult day care or a short stay in an assisted care facility).
- Creating a safe and comfortable environment is important. An occupational therapist or physical therapist can provide advice and help in making the home safer for both the caregiver and care recipient. Ask your physician, the local Alzheimer's Association or the Area Agency on Aging for a referral to a professional who is experienced in home modification and assistive devices. For people with AD who are at risk of becoming lost outside of their home, the local police should be advised, and the person should register with the Alzheimer's Association's Safe Return program.
- The person with AD will need ongoing medical care both for AD and for any other health problems that might arise. Over time the caregiver will be depended upon to help provide the status update to medical staff. Make sure there is a release of information noted in the medical chart of the patient so that the physician can speak freely with you. It is important to develop a positive relationship with the physician(s) and other health care professionals. You will need them to understand your role as the caregiver, listen to your input and work with you as a team member in providing appropriate medical care.
- The stress of caregiving can affect your health. Be sure to take care of yourself by getting regular medical care for yourself. If you need to be hospitalized or need time off from your caregiving duties, emergency respite care can be arranged. A caregiver whose health is seriously affected may need to look at alternative options for a loved one, such as a residential facility.
Families caring for a loved one with end-stage Alzheimer's should also give thoughtful consideration to placement in a skilled nursing facility or dementia care facility, where adequate management and supervision can be provided. Hiring in-home help is an alternative to relocating your loved one to a care facility.
- Hospice services are designed to support individuals at the end of life. Services may include support groups, visiting nurses, pain management and home care. Hospice services are usually arranged through the treating physician, and are usually not available until the physician anticipates that a person has less than six months to live. Several organizations specialize in helping families deal with the challenges involved in end-of-life care.