Alzheimer's Disease: A Caregiver's Journey
If the title, "The Long Goodbye," makes you think of the 1953 hardboiled private investigator novel by Raymond Chandler, you probably haven't spent a lot of time thinking about Alzheimer's disease. Those three words are increasingly entering our vocabulary as a metaphor for this devastating disease that gradually steals memories, connections to family and friends, independence and eventually lives.
Alzheimer's disease is the result of the destruction of nerve cells (neurons) in the brain. We don't know what causes it to happen, how to prevent it or how to cure it. It's progressive, meaning that symptoms worsen over time, and irreversible. Alzheimer's affects everything – cognitive ability, spatial ability, reasoning ability, decision-making ability, vision, balance, and even the immune system.
Today, over 5 million Americans live with some form of Alzheimer's disease and another 360,000 new cases are diagnosed each year.1 And, since it's a disease that increases with age, the numbers will soar as our average life expectancy increases and baby boomers grow old. The number of people in the United States with Alzheimer's is expected to more than triple by the middle of this century.
There are three known types of Alzheimer's Disease.2
- Early onset Alzheimer's: This is a rare form of Alzheimer's disease in which people are diagnosed with the disease before age 65. Less than 10% of all Alzheimer's disease patients have this type.
- Late-onset Alzheimer's: This is the most common form of Alzheimer's disease, accounting for about 90% of case. It usually occurs after age 65 and may or may not be hereditary.
- Familial Alzheimer's disease (FAD): This is an extremely rare form of Alzheimer's disease, accounting for less than 1% of all cases. It has a much earlier onset (often in the 40s) and can be clearly seen to run in families.
We know that advancing age is the number one risk factor for developing Alzheimer's disease and heredity plays an important but smaller role. There are also several lifestyle factors that may be implicated, including high cholesterol, high blood pressure, being overweight, getting little exercise and eating an unhealthy diet. Other probable risk factors are head injuries, brain inflammation and exposure to toxins.
Being absent-minded does not equal having Alzheimer's disease. Warning signs of Alzheimer's disease include: 3
- Memory loss
- Difficulty performing familiar tasks
- Language problems
- Disorientation to time and place
- Poor or decreased judgment
- Problems with abstract thinking
- Misplacing things
- Changes in mood or behavior
- Changes in personality
- Loss of initiative
Diagnosing Alzheimer's can be challenging, especially in early stages. Quite often, both patients and their families will try to cover up problems. In the past, a definitive diagnosis could only be made through an autopsy. Today, a PET scan coupled with neuro-psychology testing can give doctors a fairly complete picture.
Alzheimer's goes through three general stages called early, mid and late stage, or mild, moderate and severe. In early-stage Alzheimer's, mood swings and the weakening of mental abilities begin to be noticeable. People may begin to have trouble with driving, paying bills, and other tasks of daily life. As the disease progresses, people have difficulty with simpler tasks, such as using appliances, using the telephone, and dressing. By the mid-stage, major changes in behavior develop, and people may begin to forget where they are. In the late-stage, physical problems dominate; people have trouble walking, talking, swallowing, and controlling their bowels and other body functions. Eventually, the disease is fatal.
The disease follows a unique course for each patient. We don't know how long it will take an individual to go through each stage and wide variations are possible. Survival could be as few as a couple of years in more aggressive forms of the disease, but some people may live for 15 to 20 years.
New drugs have proven effective in slowing the progress of the disease. One class of drugs known as acetylcholinesterase inhibitors, sometimes called cholinesterase inhibitors, work by preventing the breakdown of acetylcholine, a chemical in the brain that helps memory and other thinking skills. Donepezil is the generic name of a commonly prescribed cholinesterase inhibitor (in the show it is referred to by a brand name, Aricept). Two other generic cholinesterase inhibitors are galantamine and rivastigmine. A newer drug that has also proven effective is memantine. Recently, a multi-center study was directed by University of Rochester Medical Center faculty. It concluded that memantine, when taken with donepezil, helped moderate-to-severe Alzheimer's patients maintain or in some cases improve their memory and other mental activities and their ability to do the tasks of daily life. Memantine is one of a new class of drugs for treating Alzheimer's and the first approved by the FDA for advanced Alzheimer's patients.
Of course other factors, such as care and personal environment, are also important for people with Alzheimer's disease and their caregivers. Physical, emotional, and mental activities, such as music therapy and brain exercise (doing crossword puzzles), have shown to be helpful.
1 Alzheimer's Association, What is Alzheimer's?
2 WebMD, Alzheimer's Disease Guide, September 09, 2008
3 Alzheimer's Association, Diagnosing Alzheimer's Disease
For a list of resources on caregiving, go to Second Opinion, Caregiver Burnout (Episode 507)
For a list of resources on end-of-life planning, go to Second Opinion, End of Life (Episode 313)
For more information about Alzheimer's Disease, use the links below:
The Alzheimer's Association is a national U.S. non-profit organization providing support to families and caregivers. Their extensive web site includes basic information on Alzheimer's and resources for patients and caregivers, including a list of local Alzheimer's Association chapters which give information on care services, and links to online chat and support groups. The site also provides an overview of current research. Contact its 24/7 Helpline at for more information, referral, and support.
The ADEAR Center is a service of the National Institute on Aging (NIA). Their web site provides a toll free phone number and an email address for access to experts who can answer questions about Alzheimer's. On-line publications include updates on current NIA research, Alzheimer's fact sheets and extensive yearly progress reports on the state of Alzheimer's research. The site also includes a searchable bibliographic database of more than 5,000 abstracts of books and journal articles on Alzheimer's and a searchable database of clinical drug trials.
ADI is the umbrella organization of Alzheimer associations around the world. The site includes information on the disease, how to find help and resources for caregivers.
The Alzheimer's Research Forum is a non-profit organization that promotes collaboration among Alzheimer's disease researchers. Though primarily directed towards researchers and other professionals working with Alzheimer's, it does include a section for laypersons, which provides abstracts of current research papers, a diagnosis and treatment guide, and links to Alzheimer's news sources, research centers and support groups for caregivers. The section dedicated to physicians includes a series of interviews with top researchers in the field and posts articles for discussion and comment.
Operated by the U.S. Administration on Aging, this is a nationwide directory of state and area agencies that deal with services for the aging. There's also a toll-free number – 1-800-677-1116-which operates Monday though Friday, 9:00 a.m. to 8:00 p.m., Eastern time.
|Family Caregiver's Alliance||A public voice for caregivers, FCA provides information, education, services, research and advocacy to support and sustain the important work of families nationwide caring for loved ones with chronic, disabling health conditions.|
Healthassist puts the client at the center of every interaction with the healthcare and insurance system. With years of experience on both the direct patient care side and business side of healthcare, Principal Dianne Savastano has the skills to offer consulting, coaching, information and assistance to help empower you to make the best decisions regarding your family's healthcare.
The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
These quick facts come from The Alzheimer's Association:
- Over 5 million Americans have Alzheimer's disease. This includes:
- About 5 % of people over 65
- About 20 % of people over 80
- About 30 % of people over 90
- Alzheimer's disease is the most common cause of dementia in adults. "Dementia" may be defined as loss of memory and intellect that interferes in routine personal, social or occupational activities.
- Alzheimer's disease is not a normal part of the aging process. It's a progressive disease that affects the brain and can result in:
- Loss of memory
- Changes in behavior
- Loss of ability to think and speak clearly
- Loss of ability to perform everyday tasks
- Women are more likely than men to develop Alzheimer's disease, but only because they live longer; there is no gender risk difference.
- More than seven out of 10 people with Alzheimer's live at home.
- Half of all nursing home residents have Alzheimer's or a related disorder.
Key Point 1
The time to prepare for the future is at the earliest stage of a disease when the patient, the family and the healthcare team can plan together. A family needs to talk openly about the consequences of the diagnosis and what it means to the future.
Denial and depression are common reactions to a diagnosis of Alzheimer's disease. Some doctors say that people appear to fear Alzheimer's more than they fear cancer. Yet, those people who are able to face it head-on are the ones who will fare better over the course of the disease.
When the diagnosis comes in the early stages of Alzheimer's disease, the patient and their loved ones have time to make important decisions. People with very mild Alzheimer's disease are still able to make informed decisions about their own future care, while those with moderate Alzheimer's may no longer be able to competently participate.1 Making decisions on someone else's behalf is never easy. Knowing their wishes and understanding their values so you can use them as a guide can lessen the struggle.
While the ideal is to support the person in making decisions independently as long as possible, drawing up a plan for the time when they can no longer do so just makes sense.
Establishing a will or estate plan, if one doesn't exist, should be the first step. The next is to fully consider and make the difficult decisions about the individual's needs while they still live. Issues include:
- Who will be the primary decision maker when the time comes
- When to stop driving and other safety concerns
- Personal care
- Treatment options and how symptoms will be managed
- Services that will be needed
- Whether and at what stage the individual might go to a care facility
- End of life – get information about end-of-life planning at Second Opinion, End of Life (Episode 313)
Wherever possible, legal paperwork should be completed. Advance directives are particularly important and include:
- Living Will. This is a written, legal document that describes the kind of medical treatments or life-sustaining treatments you would want if you were seriously or terminally ill. It isn't just for people who want to avoid being sustained indefinitely on mechanical life support. It's a way to spell out personal wishes. A Living Will does not let you select someone to make decisions for you.
- Durable Power of Attorney. This advance directive allows you to designate a surrogate – a person who will make treatment decisions for you if you are unable to make medical decisions.
- Health Care Proxy. This is another name for a Durable Power of Attorney.
- Do-Not-Resuscitate Order (DNR). This is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing.
Open and frank discussion among loved ones is essential. But, families should not go it alone. Health care providers and social workers cannot act as legal or financial advisors, but they can encourage planning discussions between patients and their families and help them with ethical issues. They can help families:
- Discuss difficult topics and complex issues
- Address emotional concerns
- Make short- and long-term plans
- Evaluate in-home care needs
- Select care personnel
- Coordinate medical services
- Evaluate other living arrangements
- Provide caregiver stress relief
Qualified clinicians can also guide patients, families, the care team, attorneys, and judges regarding the patient's ability to make decisions.2
1 Neurology, May 10, 2008, American Academy of Neurology
2 Legal and Financial Planning for People with Alzheimer's Disease, U.S. National Institutes of Health, National Institute on Aging
Key Point 2
With many diseases, the care giving burden progresses as the disease progresses. The caregiver's health is important not only for the patient, but also for the caregiver's long term wellness.
"Alzheimer's disease is a cataclysm that tests the human spirit of caregivers like no other," wrote Sherwin B. Nuland, a physician and author of the best-selling 1994 book How We Die. The devastation happens on many levels. Caring for an Alzheimer's patient can be a full time job. It is a round-the-clock responsibility that is physically exhausting. But, the emotional drain can be more difficult than the physical drain. It is natural to hope that you can have a positive effect on your loved one, but it is important that a caregiver recognizes that the condition worsens no matter what you do.
A substantial majority of Alzheimer's patients are cared for at home by family members; estimates range from two-thirds to 95 percent. But these largely invisible caregivers, who buttress the nation's health care system, often pay a terrible price. The architecture of the family is turned upside down, turning children into parents and parents into children. Emotional bonds and financial resources are strained, even in the most resilient households. Caregivers get sick from the stress.
Caregivers have to make peace with a gamut of emotions – the frustration of remaining patient, loneliness, constant worry, resentment, feelings of guilt, and the heartbreak of seeing a loved one leave them even though they're still physically present. Perhaps most debilitating is knowing that each new day will most likely be worse than the last. The progression of the disease is inevitable.
Caregivers must be constantly vigilant and alert to even the smallest of changes so they can reconsider what is possible and what is safe. Wandering is common for Alzheimer's patients. Some may eat spoiled foods or forget if they've eaten at all. They can become agitated and aggressive with seemingly little provocation.
Despite it all, most caregivers are adamant that caring for their loved is a privilege, not a burden.
If you are caring for someone with Alzheimer's disease:
- Take care of yourself. Think about those pre-flight, in-case-of-emergency instructions that coach you to place the oxygen mask over your face first so you'll be capable of helping others.
- Ask for help. Surround yourself with support systems like family, friends, support groups and health care professionals.
- Focus on what your loved one can do and accept what they cannot.
- Try to keep your environment as calm and consistent as possible.
- Build physical activity into the day for both you and the loved one you are caring for.
- Make sure there is a plan in place in case you get sick.
- Find a doctor who is supportive.
- Begin to plan for your own future. Caregiving can be all-consuming; when it is over you will often need to redefine your purpose in life.
1 Alzheimer's in the Living Room: How One Family Rallies to Cope, The New York Times, September 16, 2004
Conduct an off-site search for Alzheimer's Disease information from MedlinePlus. These up-to-date search results are based on search terms specific to Second Opinion Key Points.
Alzheimer Caregivers- main page
Alzheimer's Disease-main page
Ask Your Doctor
For questions to ask your doctor on caregiving, go to Second Opinion, Caregiver Burnout (Episode 507)
This list of questions is a good starting point for discussion with your doctor; however, it is not a comprehensive list.For the Patient:
- There seems to be a strong history of Alzheimer's in my immediate family. Is it heritable, and should I get tested?
- What tests can be done to detect Alzheimer's?
- I seem to have some problems remembering things, like the names of acquaintances. Could this be Alzheimer's disease?
- How can you be sure the problems I'm experiencing are really Alzheimer's and not just part of the normal aging process?
- Are there other diseases that can mimic Alzheimer's?
- Are there any foods or supplements that might help prevent Alzheimer's?
For the Caregiver:
- Do you treat people with Alzheimer's disease? If not, can you recommend a specialist?
- What is the usual lifespan of someone with Alzheimer's disease?
- What behavioral and mental changes can I expect over time? How quickly will these changes occur?
- What treatments/drugs are indicated in Alzheimer's disease?
- What side effects are likely?
- Do you suggest changes in immediate surroundings or activities that could relieve some of the symptoms?
- Do you recommend any alternative treatments, such as vitamin E supplements or ginkgo biloba?
- Are there any local clinical trials you recommend?
- When and how do I approach the decision to take away access to driving an automobile?
- When is the right time for a care facility?
- Is there a caregiver support group in this area?