How to Cope if You Have Alzheimer's

A diagnosis of Alzheimer's raises practical questions -- both short- and long-term. Follow the links below to learn how to manage the early stages of Alzheimer's and how to prepare for the challenges ahead.




  • Arranging care

  • Living alone

  • Retiring from work

  • Giving up driving

  • Turning over financial and legal affairs

  • Saying good-bye to independent living


Arranging care



Contact your local Alzheimer's Association affiliate to get connected with support groups, physicians, resources and referrals, home-care agencies, supervised living facilities, a telephone help line, and educational seminars.



Also, the National Association of Professional Geriatric Care Managers (520-881-8008) can direct you to a geriatric care manager who has a background in social work or nursing and can help you assess your needs, develop a long-term care plan, and find appropriate services.



Every person with Alzheimer's disease should have one primary care physician to coordinate care, says Daniel Kuhn, M.S.W., in his book Alzheimer's Early Stages. "Physicians of internal medicine or family practice are typically involved in primary care, and are often experienced in diagnosing and treating symptoms of AD [Alzheimer's disease] as well as in addressing other medical problems that may arise," he writes. "To find a good physician you can make inquiries through the referral service of hospitals, adult day centers, home-health agencies, and the local chapter of the Alzheimer's Association. If the names of certain physicians are repeatedly suggested by your sources of information, then it is worthwhile to follow up on these leads."



Find out whether you are covered by insurance. According to the Alzheimer's Disease Education and Referral Center (a service of the National Institute on Aging), the Federal Medicare program and private "Medigap" insurance only offer short-term home health and nursing home benefits. If you are a low-income individual, contact your state-run Medicaid program about long-term nursing home coverage. "Also, your state's insurance commission can tell you more about private long-term care policies and offer tips on how to buy this complicated insurance," says the Center's website. "These agencies are listed in your telephone book, under 'Government.'"



Finally, talk with family and friends about treatment and care, and about where or with whom you want to live when you're no longer able to live by yourself.



Living alone



For people with Alzheimer's who want to live alone, the Alzheimer's Association offers these tips for dealing with the normal tasks of daily life:

  • Do tasks during the times of the day when you normally feel best.




  • Give yourself time to accomplish a task and don't let others rush you.




  • Take a break if something is too difficult.




  • Maintain daily routines.




  • Talk to your local chapter of the Alzheimer's Association or your physician about getting help in your home with housekeeping, meals, transportation, and other daily chores.




  • Keep a book containing important notes such as phone numbers, people's names, any thoughts or ideas you want to hold on to, appointments, and your address and directions to your home.




  • Keep a list of emergency phone numbers by the phone.




  • Use an answering machine to keep track of phone messages.




  • Put names on photos of those people you see most often.




  • Have someone call to remind you of meal times, appointments, or to take your medication.




  • Plan for home-delivered meals if they are available in your community.




  • Label cupboards and drawers with words or pictures that describe their contents.




  • Ask a family member to help organize your closet and drawers to make it easier for you to find what you need to get dressed.




  • Mark off days on a calendar to keep track of time.




  • If you have a hard time keeping track of your bank accounts and record keeping, tell your bank. They may provide special services for people with Alzheimer's.




  • For checks such as your retirement pension or Social Security benefits, arrange for direct deposit into your bank account.




  • Leave a set of house keys with a neighbor you trust.




  • Have family, friends or a community service program call or visit daily. Keep a list of questions and concerns to discuss with them during your time together. Allow them to check things out around the house, such as electrical appliances, mail, and perishable food items.




  • Check your smoke alarm regularly.





Retiring from work



If you have early-stage Alzheimer's disease and are still working, you should tell your employer immediately. Over time, the disease is bound to affect your work performance, and your employer has a right to know. However, you also have a right to medical confidentiality. Ask the employer or human resources department to inform only those who truly need to know.



Depending on the type of work involved, you may be able to continue for a while, or may be able to switch to less demanding responsibilities. But eventually, your employer will most likely insist that you discontinue working.



When this happens, the news is often wrenching. Most people have a great deal of identity tied up in their jobs, and it hurts deeply to be told they can no longer perform competently. Get some kind of counseling -- an employee assistance program, a trusted clergyperson, or a social worker or psychotherapist experienced with dementing illnesses.



Retirement also has profound financial consequences. You should enlist someone you trust to help you assess your financial condition and obtain Social Security benefits, a company pension, or personal retirement assets (IRAs, SEP IRAs, 401(k)s, private pension plans, etc.)



In addition, Alzheimer's is a disabling disease, and the Social Security Disability Act mandates financial aid for those who can no longer work because of a disability. To qualify, you must have worked for 20 of the past 40 calendar quarters (five of the last 10 years), and have been disabled for at least 12 months. You may need medical records to document the duration of disability. The Alzheimer's Association can also help you document disability -- contact your local chapter. Be prepared to have a petition for disability benefits denied initially. If you are persistent, benefits may be granted on appeal.



Giving up driving



Like a job, a driver's license is a symbol of competent adulthood, not to mention that for the vast majority of Americans, loss of a driver's license makes daily living considerably more difficult.



But even mild Alzheimer's disease more than doubles risk of auto accidents, according to the National Institute on Aging. "Most people with early Alzheimer's are not fit to drive," Karlene Ball, Ph.D., a professor of psychology at the University of Alabama at Birmingham, told The New York Times.



A recent Swedish study shows that auto accidents may even serve as an early warning sign of Alzheimer's. In the study, researchers performed brain autopsies on 98 elderly people killed in auto accidents in Sweden or Finland. None had been diagnosed with Alzheimer's. But one-third showed the beginnings of the characteristic brain abnormalities, and another 20% showed brain abnormalities that suggested an earlier stage of the Alzheimer's process. The prevalence of Alzheimer's in the general elderly population is much lower. Perhaps driving ability is one of the first skills lost to the disease, presumably because it demands so much information-processing, and requires constant decision-making.



If you have been diagnosed with Alzheimer's, the longer that you continue driving, the greater your risk of accidents that can hurt not only yourself, but others as well. And your caregiver can be held legally liable if they knowingly allow you to drive. In other words, if you get into an accident, your loved one can be sued and possibly be held criminally liable.



Ask family members and friends to drive. Look into adult daycare programs that offer outings. Walk to close destinations. Or for as long as you can, use cabs. They cost money, but if you add up the real cost of owning the car you used to drive, cabs may be comparable -- or cheaper.



When you stop driving, get a nondriver State ID card for check cashing and identification needs.



Turning over financial and legal affairs



Barring some treatment breakthrough, an Alzheimer's disease diagnosis means that over time, you will become increasingly less able to manage your own legal and financial affairs. You will need to have others assume these responsibilities for you.



Ideally, the time to plan for this transition is as soon as possible after the Alzheimer's diagnosis, when you can still make legally competent decisions for yourself, and know where your assets are located.



Of course, a diagnosis of Alzheimer's disease is very upsetting, and in the immediate aftermath, planning for your eventual legal and financial dependence on another may not seem a high-priority task. But the sooner you and your caregiver tackle the legal and financial aspects of the disease, the better.



Finances



Like other aspects of independent life, for many people -- especially men -- money management has a symbolic component closely linked to self-determination and privacy. Even after you've lost some ability to balance a checkbook, deal with investments, file tax returns, or make change, you might not be able to conceive of turning over your financial affairs to anyone else.



To begin the process of financial transition, ask someone you trust to double-check your checkbook, tax returns, etc. Then, over time, let your caregiver gather bills and pay them him- or herself from your account. Ask your caregiver to establish "tabs" with trusted local merchants, so that you can still shop, but without regard to what you pay. The merchant simply accepts whatever you offer, and your caregiver settles up periodically.



It's best that you carry only small bills and change, so you don't accidentally squander money -- for example, by paying $100 for a pound of coffee and then refusing to take change.



Legal transfer of control



Management of one's own legal and financial affairs is a basic right of all competent adults, and all 50 states and the District of Columbia have laws protecting individuals from the seizure of these rights by others. But all 50 states and the District of Columbia also recognize that in certain situations -- Alzheimer's disease and other dementias and brain injuries -- people may become unable to exercise competent control over their own legal and financial affairs, and they allow control of the legal and financial affairs of a person with dementia to pass to another person.



This transition won't be easy for either you or for the person who assumes legal and financial control.



Durable powers of attorney



If you want to give another person the right to make some legal or financial decision for you -- for example, signing a contract while you're out of the country -- you execute a legal document called a "power of attorney." Power-of-attorney documents are typically short-lived and very specific, empowering the person you designate to act on your behalf only in a limited capacity.



However, if there is reason to believe that you might become mentally incapacitated in the foreseeable future, all 50 states and the District of Columbia allow legally competent adults to execute legal documents called "durable powers of attorney," which give the designated decision-maker -- known as the "agent," or "attorney-in-fact" -- broad power over the affected individual's life, for example, the power to place the person in a nursing home and use the person's assets to pay for long-term care.



Durable powers of attorney have advantages and disadvantages:

  • On the plus side, compared with other ways to assume legal and financial authority over another, durable powers of attorney are relatively inexpensive to execute and do not require court action or court supervision. In addition, because they bypass the courts, your financial affairs remain private and do not become a matter of public record.




  • On the minus side, durable powers of attorney are not court-supervised, so there is more potential for abuse by the attorney-in-fact, which may be an issue if your loved ones disagree about what's best for you.


Durable power of attorney documents may also include specific instructions about how you want to be cared for, and a "living will" outlining advanced directives about end-of-life medical treatment.



Most experts in the legal aspects of Alzheimer's disease recommend durable powers of attorney as the easiest, most efficient, and cheapest approach to a caregiver's assumption of control of your legal and financial affairs. However, you must be competent at the time you sign the durable power of attorney documents, so they must be drafted fairly soon after an Alzheimer's diagnosis.



Laws governing durable power of attorney agreements vary from state to state. Software programs abound for creating them, but they may not meet the specific requirements of your state. Your best bet is to have an attorney experienced in elder law draft your durable power of attorney, or review any durable power of attorney you draft.



Conservatorships



If you become legally incompetent and have not executed a durable power of attorney, in order to assume control over your legal and financial affairs, your caregiver will need a court's permission in the form of a "conservatorship." Your caregiver becomes the "conservator" and you become the "conservatee."



Anyone -- a spouse, relative, or friend -- may petition the court to appoint a conservator for an individual who appears to be incompetent.



Once a conservatorship petition is filed, the court assigns an investigator to assess your competence, and interview any individuals who may have an interest in the conservatorship -- the proposed conservator and other family members -- to assess the situation.



The next step is a hearing, where the investigator reports back to court, and a judge decides whether to grant the conservatorship. If the court grants conservatorship, the judge appoints the conservator, and specifies the conservator's powers and reporting responsibilities to the court.



Conservatorships have advantages and disadvantages:

  • On the plus side, they are court-supervised, so there is less potential for abuse by the conservator than there is in durable power of attorney arrangements where the attorney-in-fact is neither court-appointed nor court-supervised. A conservatorship might be a good approach in a situation where family members are in conflict and cannot agree on how to care for you and deal with your assets.




  • On the minus side, conservatorships can be very expensive to establish because the process requires considerable court and investigator time, and family members may want to hire attorneys to represent their views.


Saying good-bye to independent living



It can be very wrenching to leave your own home and move in with a caregiver or enter an assisted-living facility or nursing home. On a symbolic level, it is a clear statement that you are no longer a free agent, but have become dependent on others.



A good way to ease out of independent living and into living with someone else is through a slow transition process: First a combination of frequent visits from caregivers who help with cooking and housework. Next, a meals-on-wheels program, a maid, and a daytime aid a few days a week. Then full-time at-home help -- in either your home, or your caregiver's.