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Alzheimer's Disease:
A Family Affair and a Growing Social Problem

(Released April 2001)

 
  by Sandra S. Stanton  

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I see her, dressed in rose knit pants and flowered shirt, sitting in a chair. Her soft gray wavy hair has been neatly brushed, though not (I know) by the hands that lie still in her lap. There is no expression to be read in her face, and her pale blue eyes look straight ahead not at, but seemingly right through, a group of women stringing bead necklaces at a nearby table. Though I am in her line of vision, she doesn't notice my approach. I reach out and touch her shoulder and she looks up, startled at first and then puzzled. I say "Hi Mom, it's Sandy! I'm here to see you." A tentative smile crosses her face and then spreads to her eyes, their pale blue color seeming to brighten as they light up with recognition. Elated with her delight, I hug her and kiss her cheek. She reaches for my hand, draws it to her face and says "Ohhhhhh!"

How did we reach this point--where mother only sometimes recognizes daughter, and then only as a person whom she loves, she knows not why, for such things as familial relationships are too complex for her to comprehend. She no longer even knows who SHE is, beyond her self of the moment, who either likes or doesn't like what she is doing (or having done to her!) or simply doesn't care.

What happened to the life memory of this woman--now approaching 94 years of age and in the late stages of Alzheimer's disease? It has been such a rich life. Born in Meridian, Mississippi, in 1907, Dean hurried through her childhood. By age 18, having already earned a two-year college degree, she was teaching high school English. She married in 1929, on the eve of the Depression, and accompanied her husband to Chicago. Less than a month before their first son was born in 1934, she received her B.A. from the University of Chicago. Their family grew as they moved on to Los Angeles, Knoxville, Washington, DC, and Idaho Falls. Then came an odyssey of adventures living overseas in the Far East, the Middle East, and Africa, before retirement in southern California. A musician from childhood--pianist, music teacher, church organist, local performer--Dean's talents grew to include painting and other arts. After the initial devastation of losing her husband of 53 years in 1982, she rebuilt her life as a widow and was soon as active as ever, including in a new area--management of her own financial affairs. She was a most talented and capable woman, her bright mind crammed with knowledge and experience.

What happened to that talent, to that mind? Where is the memory of that life?

The story of Dean is the inspiration for this account of Alzheimer's disease--what it means for the person afflicted with it, what it means for that person's family and friends, and what it means for society.

What is Alzheimer's?

Alzheimer's is a progressive, degenerative disease that attacks the brain and results in increasingly impaired memory, thinking, reasoning, and behavior. The most common form of dementia, this disease bears the name of Alois Alzheimer who, in 1906, examined the brain of a 51-year-old woman who had suffered with dementia before she died. He found plaque-like structures and tangled filaments in the neurons of the woman's brain. Later identified as amyloid plaques, these structures and their entanglement are still recognized as the main pathological changes in Alzheimer's, according to David Epstein et al.1 Scientists are agreed that beta-amyloid is an abnormal protein that poisons the nerve cells of the brain, but they do not know how this protein is formed.

The single greatest risk factor for Alzheimer's is age. While the disease can occur in younger people, even in their 30s and 40s, the risk grows considerably after age 65, and it is estimated that 50% of those who pass their eightieth birthday will be stricken. There are other risk factors besides age: family history of Alzheimer's, stress, serious illness or injury, inadequate physical and social activity, poor diet, perhaps even race. Findings of a 1998 study of 1,000 people in New York, reported by the Alzheimer's Association, suggest that the risk of Alzheimer's is four times higher for African Americans and twice as high for Hispanics as for white Euro-Americans.

To this day, the only way to confirm a diagnosis of Alzheimer's is by autopsy of brain tissue. However, physical, psychological, and neurological examination can lead to a relatively accurate diagnosis, partly by eliminating other possible causes of dementia and partly by identifying the key signs or manifestations of Alzheimer's.

With the current aging of the population in the US, the number of those with Alzheimer's is increasing rapidly, and along with it, the impact of the disease on society. Media coverage has focused public attention on Alzheimer's, especially since former President Ronald Reagan was diagnosed with it, and the call is out for something to be done! Research efforts are expanding, both into drugs to prevent or delay the disease or to ameliorate its symptoms, and into strategies for managing the care of those afflicted. Most of this research is being funded by the federal government, through the National Institutes of Health, and by the Alzheimer's Association, through private donations. The largest national voluntary health organization in the country, this association also offers information/referral and support services, through its local chapters, to the many families affected by Alzheimer's, for at this point, more than 75% of persons with Alzheimer's are cared for at home by their families.

Alzheimer's joins the family

Families come to face the fact that one of their members has Alzheimer's in many ways. Husband or wives may begin to realize that their spouse is behaving differently, is sometimes unable to perform normal tasks, and has surprising lapses in memory. Extended families living together usually come to this same gradual realization. It is different, and more difficult, when the afflicted person lives alone, because no one sees what happens every day and realizes that help is needed.

During her first several years as a widow, Dean was fine. Her calendar was always filled with activities--social, musical, physical, and educational. She joined her friends for parties, but she also took a writing class and bought a computer. She played golf and did water exercises with a neighborhood group several times a week. She traveled, mostly on Elderhostel trips. She also watched her finances, feeling responsible for having enough money to pay for long-term care should she need it in the coming years. Then, a gradual change began. She forgot appointments and dates with friends. She lost track of time, not just hours, but days. She couldn't remember where she put her watch, her keys, or the dog's leash, and sometimes she was certain that someone else had taken her things--like the earrings she later found in a shoe! Her driving became alarming, but she resented suggestions to stop. She also became obsessed with mail and telephone sweepstakes and contests, always thinking that she was surely the winner and would receive thousands or even millions of dollars the next week or month. My siblings and I chided her and talked to each other about her behavior frequently, but unfortunately, not seriously. "Mom's really getting old! I hate to use the word 'senile', but. Do you think we should do something?"

Then, one day in November 1994, Dean gave me her credit card to make travel arrangements for us to join in a family reunion for Christmas. The card was denied! This led to my investigation of her financial affairs and the discovery that she had many unpaid bills but also had decreased her savings by half, the money going to sweepstakes, contests, and oddly named charities--maybe legal, but legitimate? It also led to a visit with her doctor, an internist with a specialty in geriatrics. While Dean dressed after the examination, I was told that my mother probably had Alzheimer's, but we should see a neurologist for further testing. We went to the reunion, but during that time, my brothers and sister and I met with each other, and then with Dean, to tell her that she needed and would have to accept help in the management of her life. She wasn't the least bit appreciative!

With a few minor changes, Dean's story could be that of many sufferers of Alzheimer's and their families. Recognition of this disease would come much sooner with knowledge of the ten warning signs of Alzheimer's, according to the Alzheimer's Association Fact Sheet on the subject.

  1. recent memory loss
  2. difficulty performing familiar tasks
  3. problems with language (finding words or completing sentences)
  4. disorientation as to time and place
  5. poor or decreased judgment
  6. problems with abstract thinking
  7. misplacing things (and often finding them in strange places, such as earrings in a shoe!)
  8. changes in mood or behavior (tears or anger for no discernible reason)
  9. changes in personality (confusion, suspicion, paranoia, fear)
  10. loss of initiative (passivity, needing prompting to do everyday things)
One of the primary needs of families just beginning their experience with Alzheimer's is information. While not much information was available for the public even into the 1980s, that is no longer the case. The written word on this disease has grown from a trickle to a flood. Information is everywhere--in print, on television, on the Internet--and not just about scientific studies or clinical research. Much of it is about how ordinary people deal with this multi-layered problem that has invaded their lives. The Internet not only provides a deep well of information, but also serves to connect people seeking support and advice through Web communities, such as the Alzheimer's Association Web site.

How the family and the newly diagnosed person face Alzheimer's

In the early stages, even the person diagnosed with Alzheimer's can see at least some of its signs in himself or herself, if willing to face them, and can seek help and advice from patient support groups, which have now been formed in many areas. Robyn Yale2 describes such groups and shows what they can mean to their members. She quotes Herm, a 72-year-old man in the early stage of Alzheimer's, "I want people to know--I've got a lot of life left!" Some people may know what is happening to them, or at least realize that something is happening, but they don't want to admit it. They may be ashamed to say anything to friends or afraid of losing a job. But for those who do acknowledge their problem, support groups can provide great help by allowing them to vent their frustrations and anxieties, and share experiences and coping strategies.

Dean did not want to face her condition. Though she knew something was happening in her life, she denied vehemently that she had Alzheimer's. She no longer had the judgment to realize how she had been taken advantage of financially or to understand why she wasn't asked to play the piano at community events. She didn't want to see another doctor, and she didn't want anyone to take care of her! But someone had to. Since none of us could leave our homes to live with her, and it seemed cruel and probably counterproductive at this point to separate her from home, her little dog, friends, activities, and church, we decided that I, who lived closest (about 35 miles away), would serve as a care manager. My first job was to find a caregiver, and I found Marguerite, who would spend a good part of almost every day with Dean for the next two years.

Next, armed with a Power of Attorney, I tackled the financial matters. It was imperative to control her access to money because she remained convinced that she "would be the winner" if she sent in her "entry fee" checks, gave the largest donation to a "charity," or bought terribly overpriced toiletries by the case. I arranged to succeed her as Trustee of her Living Trust (which included all property and money); fortunately, she had named me Successor Trustee some years earlier. We had also already instituted a Durable Power of Attorney enabling me to make medical decisions when she could no longer do so for herself. I had all the tools, but I didn't have her cooperation. At that point, my mother was often angry about what she saw as my interference in her life. She balked at seeing the neurologist, but we went. (His diagnosis was Alzheimer's, with 95% certainty.) She desperately wanted to control her money, so I let her keep a checking account, but controlled the balance. But perhaps what angered her most was that I made her stop driving. I had to take the keys away. She refused to relinquish her license, so I arranged for the Department of Motor Vehicles to give her a driving test, after which the white-visaged examiner took her license! This remained an issue until the car was sold.

Meanwhile, Marguerite handled all the everyday problems, trying not only to help but also to protect Dean--screening telephone calls, safety-proofing the house, enlisting the aid of Dean's friends and neighbors to help her maintain an adequate social life. While Marguerite prepared the meals, she kept Dean involved in selecting foods and shopping. Though a strong-minded person herself, she always handled Dean in such a respectful and considerate way that, after the first few months, there was rarely any conflict. We were fortunate to find Marguerite. Families who need outside care can have terrible experiences and often deal with a high turnover rate. But most persons with Alzheimer's are cared for by their families.

For caregiving families, help depends on not allowing themselves to feel stigmatized by the problem, ashamed to admit that a member has Alzheimer's, and perhaps afraid that their time will come! Children in the household may be especially vulnerable to stigmatization and not want friends to visit. Even if the diagnosis is open, some families have difficulty accepting such a major change in their lives. For instance, in families with traditional gender-role attitudes, the wife whose husband has Alzheimer's will probably have to handle the family finances and other decision making, and her husband may become resentful; or the husband who has never cooked may have to take over in the kitchen, much to his ill wife's dismay, and perhaps his own, as well! Madelyn Hicks et al state that a good relationship between caregiver and recipient, one that maintains the recipient's self-respect and dignity, is the key to success in role change and caregiving.3

A good relationship, however, depends much on communication, and communication between caregiver and Alzheimer's patient can be difficult. But it is possible, and caregivers who find effective ways to communicate increase the quality of both their own and their charges' lives. In an article by Patricia Hendryx-Bedalov, transcripts of communication between three men with Alzheimer's and their healthy wife-caregivers illustrate the importance of caregivers' attitudes and manner of speech in achieving successful responses to requests.4 As Dean's caregiver knew, respect elicits respect, and specificity and concreteness enhance comprehension. Rather than calling from the kitchen, "Come on...lunch is ready," the caregiver will earn a more willing and immediate response by extending a hand and saying "Peter, please come with me to the table. It's time to eat lunch." Addressing him by name and sharing the meal with him may also help "Peter" preserve his self-identity. Meals offer a good opportunity to talk, and, according to a study of self-identity in older persons suffering from dementia, talking to them about their roles in life--in their work, with their families, in leisure activities, and as a unique individual--helps keep self-identity alive and enhances quality of life.

Caregiving can be a heavy burden

The roles that family caregivers must accept can be overwhelming. In addition to meeting the physical needs of the relative with Alzheimer's, such as helping with personal hygiene and dressing, preparing meals, and housekeeping, it is important to ensure that the person is stimulated by both social and physical activity. The caregiver must also think to the future, plan for increasing custodial and medical care, and usually take over fiduciary responsibilities. Faced with all these tasks, caregivers can easily fall victim to illness and depression. A study of family dementia caregivers documented the toll on their health status. Whether the caregiver was an adult child or spouse (usually daughter or wife), both physical & psychological health problems were found--stress, depression, illness, increased use of alcohol or tobacco, and lack of physical exercise, among other things, according to C. L. McKibbin et al.5 The study also found that higher education and income levels of caregivers were associated with greater attention to their own health-promoting behaviors, which alleviated stress. These socioeconomic differences point to the need to target support efforts to less advantaged caregivers.

Another danger for the overburdened caregiver is becoming resentful to the point of neglecting the care recipient's needs or engaging in abusive behavior--psychological or physical. The National Elder Abuse Incidence Study reported that in one year, 1996, more than 550,000 persons age 60 or older had experienced some type of neglect or abuse, 90% at the hands of a family member. Elderly persons with advancing Alzheimer's or other dementia are more vulnerable than most because they cannot understand what is happening to them, defend themselves, or communicate their distress to those who might help them. They are also more likely to be taken advantage of financially, since the caregiver usually handles financial matters. Various studies have found that from 12% to 55% of caregivers have admitted committing some type of abuse. The Administration on Aging, a federal agency, is pursuing preventive efforts in this area through training workshops to help health care and other professionals recognize abuse, increased funding of adult protective services, and public education. For people with Alzheimer's who live in residential facilities, the Long-Term Care Ombudsman Program provides advocates who serve as an ongoing presence, overseeing residents' care and looking for signs of abuse.

It is important, then, that care for themselves be caregivers' first responsibility. Available to help the caregiver meet this need are numerous support services, many offered by volunteers through local chapters of the Alzheimer's Association, church groups, or other local service organizations. Of all services, respite care is probably the most important, for what the caregiver needs most is time away, whether for a few hours or a few days. For those who can afford it, residential respite care is available in private facilities or care at home through home help/nursing registries.

Accepting the role of informal (unpaid) caregiver to a person with Alzheimer's, with all its responsibilities as well as distasteful tasks, requires commitment and a capacity for caring. In a Canadian study of caregivers for relatives with Alzheimer's, their personal accounts revealed that this capacity unfolded over time in three phases: "development of caring capacity for the care recipient, development of capacity for self-care, and development of caring capacity for others." Further, their caregiving experience at home prompted some "to become caregivers for humanity and to expand their sense of self," states Geila Bar-David.6 With the exception of men whose wives have Alzheimer's, family caregivers are usually women. James M. Laditka's study of adult children caring for older parents cites panel data showing that daughters provide considerably more help than sons, even if they are employed and have families.7 In Suzanne Cahill's interview-based study in Australia, 39 women who cared for husbands or mothers with dementia described their motives for accepting this difficult, long-term task. Many had given up paid employment, and all felt they had neglected other family duties and relationships. However, fewer than half reported "moral obligation" as a motive, while 95% cited "concern" and 92% "love."8

There can be considerable racial and cultural differences in how families deal with Alzheimer's. A qualitative study conducted by Ana Ortiz et al among Latino and Irish American caregivers of demented elders in the Boston area showed how "ties to homelands and neighborhood institutions act as mediators and shapers of anticipatory grief, caregiver burdens, and caregiver resources, serving as a buffer against exhaustion and despair for some families (primarily the Irish American sample) and as an additional site of loss or stress for others (primarily the Latino sample)."9 While both a Japanese sample and a comparable sample of Americans reported that extreme dependency of the Alzheimer's patient on the caregiver was the heaviest burden for them to shoulder, results of Y. Arai's study suggest that "the positive value attached to personal dependency may make caregiving more expected and less onerous in Japan."10 Research indicates that, compared to whites, African Americans need more initial information to help them understand a relative's Alzheimer's disease and more guidance in caregiving. In Chinese culture, the gender-role reversal often required because of a husband's Alzheimer's disease "is more dramatic and traumatic than in most Western societies."11 An analysis by Cheryl Ho et al revealed that the use of social/medical services by African American, Chinese American, and Latino caregivers to elders with Alzheimer's could be negatively related to ethnicity, stress-related variables, language, religion, and culture.12 Social workers should seek to overcome barriers to minorities' use of all available services. According to L. Cohen, in India, the greatest barrier to seeking help is stigma. Alzheimer's is rarely diagnosed, and even less often publicly admitted, because it is viewed as a failure of the person to adjust to life's changes or a consequence of a "bad family," one not providing intergenerational support.13

Alzheimer's is a progressive disease

In the second year of her care at home, Dean's condition began to worsen more rapidly. She was often lost in time and space--telling Marguerite she had to "go home," because her mother would be angry if she wasn't there in time for dinner, or asking me to "go upstairs" (in her one-story house) and tell my father (gone for 14 years by then) that dinner was ready. I might find her "reading," but if I asked what the book was about, she couldn't tell me, and her determination to have a checkbook dwindled. She was increasingly less interested in outside activities, often thwarting Marguerite's well-intentioned plans. Though she had been physically strong and active all her life, she began to "trip" and fall more frequently, suggesting a loss of balance. All these things are classic signs of Alzheimer's.

Among the mental symptoms of Alzheimer's, beyond simple loss of memory, are problems with verbal expression (forgetting or misusing words, being unable to construct complex sentences); disorientation in relation to time and place; lessening analytical ability and, along with it, confusion, frustration, and irritability; agitation--pacing around the house, not knowing what to do; unexplained changes in mood or behavior; passivity or inability to take the initiative about anything; and wandering away from home. By this time, the person with Alzheimer's needs relatively close supervision, because his or her actions are unpredictable. Some families, however, do not recognize this and allow their relatives to do things that can be dangerous, for instance, driving. A survey conducted by Geri Adler et al of 75 drivers with early stage dementia and 75 people familiar with their driving habits revealed that 49 and 32, respectively, "believed that the driver with dementia would be able to continue driving ."14 They simply lacked the insight to realize the ramifications and dangers of continued driving. Even allowing the Alzheimer's sufferer to walk alone is not without danger. The person can become totally lost just a block away from home, suffer a fall, wander into a busy street, or be taken advantage of by unscrupulous strangers. Caregivers must act to protect their charges, keep car keys out of their hands, and make sure they don't wander off unnoticed. They can also register the person with the nationwide Family Caregivers and Friends Safe Return Program, which provides cards, jewelry, and clothing labels to identify those who are found wandering.

The physical manifestations of progressing Alzheimer's include loss of strength and balance, inability to perform simple tasks and physical activities, diminishing bladder and bowel control, and loss of smell. In later stages of the disease, increased loss of smell leads to decreased appetite and weight loss. Alzheimer's eventually causes deterioration of all mind and body functioning, including the ability to swallow. It is a mortal illness.

Caregivers to those with Alzheimer's need to learn what causes problems and develop responsive strategies. If the person seems agitated, the reason may be simply poor lighting, causing glare or shadows, too much (or little) noise, or changes in furniture arrangement. Jaime Todd, former executive director of Alterra Clare Bridge at Lake Park, a residential facility for people with Alzheimer's and memory impairment (where Dean now lives), suggests that the key to calming agitation is to eliminate its source by modifying the environment or to remove the person from the environment, simply by taking him or her to another room for a change. Caregivers must learn how to handle agitation, anger, forgetfulness, and difficulties in communication with patience, good humor, and innovation. They also need to learn effective strategies for gaining the person's compliance in necessary daily activities (dressing, toileting, eating). A review by Elizabeth Pohlman of Behaviors in Dementia: Best Practices for Successful Management (Mary Kaplan et al) notes the value of this book's advice to "take the perspective of the person with dementia. The (dementia-related) behavior ceases to be a problem to be managed, but rather, a communication to be understood."15

Taking this perspective allows the caregiver to view the person as someone simply asking for help, someone who deserves that help and has every right to be treated with respect and dignity. Bob Woods writes "Dementia challenges assumptions about what it means to be a person." Some conceive of the person with Alzheimer's as "not fully alive" or "not fully human," or as suffering a "living death." Woods emphasizes the need to acknowledge "the person's rights as a citizen for respect and dignity, and treatment as a human being."16 Aging with Dignity, a nonprofit organization founded in 1996, advocates for the need of all elders and caregivers to be able to enjoy a good quality of life.

Coping strategies include more than those for helping or handling the care recipient, however. Family caregivers must learn how to cope with their burden of care, fears, depression, physical strain, and psychological stress. They need support. True caregiving families share the burden, providing at least respite care and temporary or occasional help to the primary caregiver. If family help is not available, it is imperative that the caregiver seek help and support in the community, from local chapters of the Alzheimer's Association or other volunteer organizations. Robyn Yale17 notes the value of support groups that allow the caregiver to meet others in like situations to share experiences.

Professional medical and social interventions and services

The official diagnosis of Dean's condition came from a neurologist, who first asked me to describe how Dean had changed over the last few years and then did some neuropsychological tests. Simple as they were, Dean did not do well. Most revealing though was that she did not know it. For instance, her perceptions of "easy-to-read" everyday situations depicted in cartoon-like pictures, which she described without hesitation, were totally wrong. I was quite taken aback. She had done any number of outrageous things, particularly with her money, but I hadn't realized that, from her perspective, she was probably acting rationally!

The neurologist recommended that we have regular visits with Dean's physician to monitor changes in her physical and psychological condition. The importance of this came through to me when I realized how subjective my views could be.

Some interesting studies have been done regarding diagnosis and evaluation of Alzheimer's. Steven Sabat et al suggest that "the cognitive skills of people with Alzheimer's Condition (as he calls it) can be evaluated by measuring their use of first-person pronouns, because use of such pronouns illustrates an individual's selfhood." Two case studies illustrate how "selfhood remains intact despite brain function deterioration" apparently because certain "aspects of intentional thinking are located in regions of the brain not affected by the onset of Alzheimer's ."18 Several studies suggest that in persons with mild memory impairment, the inability to identify odors (gasoline, cinnamon, etc), especially if the person identifies the odors incorrectly and does not seem to know it, is predictive of Alzheimer's. Also important to diagnosis are risk factors for the disease, such as age, family history, serious illness or injury, and race/ethnicity and culture. Peggye Dilworth-Anderson and Brent E. Gibson found under-representation of ethnic minority elderly in memory-disorder clinics and facilities. They concluded that social/cultural factors are important in recognizing signs of dementia and urged "culturally sensitive diagnosis/treatment."19 The Alzheimer's Association notes recent breakthroughs in diagnostic tests, including magnetic resonance imaging (MRI) and positron emissions tomography (PET) to scan for biological changes and brain abnormalities.

Early diagnosis, or even identification of risk factors for Alzheimer's, is crucial for drug management of the progression of the disease. Pharmaceuticals that offer some protection for those at risk include anti-inflammatory drugs (NSAIDs, including the newer Cox-2 inhibitors, but also over-the-counter ibuprofen) and cholesterol-lowering medications, both of which are thought to inhibit enzymes believed to cause the amyloid plaques that interfere with brain connections. The Elan Corporation is testing a peptide, called AN-1792, which they hope can be developed into a vaccine for Alzheimer's. Earlier laboratory testing found that the peptide reduced plaque formation in older mice and prevented formation in young mice. Several FDA-approved drugs already on the market slow the early progression of the disease, especially in terms of memory loss. These currently include tacrine (Cognex ), donepezil (Aricept ), rivastigmine (Exelon ), and galantamine hydrobromide (Reminyl ), just approved in February 2001.

As the disease progresses, however, the need for human care increases, and with it, according to Namkee Choi et al, the need for social services to guide and help the family caregiver and also to "be alert to signs of abuse (of the patient)--physical, verbal, or financial--and neglect, including self-neglect."20 C. Selai and M. R. Trimble note that "with so little (at present) available for the treatment of Alzheimer's, maintaining the best quality of life is the most important care outcome," and they report that "work is being done to devise means to assess quality of life in patients whose verbal accounts cannot be relied on."21 John Bond agrees that assessment is difficult and contends that "people with dementia and their informal caregivers should be involved in the development of usable outcome measures relevant to their needs and circumstances."22

Pamela Arnsberger et al describe the Medicare Alzheimer's Disease Demonstration, "mandated by Congress in response to awareness of caregiver problems in obtaining services to assist in the care and management of demented persons," & report a survey of 57 case managers across the US that revealed "positive effects (for caregivers) from case management interventions." Describing the US as "largely dependent on informal caregivers for the community care of those with Alzheimer's disease," they believe that appropriate approaches through case management could provide real benefits to otherwise isolated caregivers.23 Carol Cox's study of 300 African American and white caregivers revealed that the former were less likely to seek information about social services.24 Programs should target populations less likely to seek help on their own.

In addition to government-operated social services, there are many private foundations and organizations to serve caregivers and patients alike. For example, Senior Spectrum offers information and support for caregivers and respite care through the Partners in Caring Program. In addition to the support services offered by its local chapters, the Alzheimer's Association has a Web site, recently expanded, where users can discuss such topics as long-distance caregiving, financial fears, legal issues, and other problems.

Not all help has to be of a practical nature. Religious faith can help both the sufferer and the caregiver. Music is known to have a therapeutic effect on those with dementia. In addition to stimulating rhythmic movement, it can be relaxing and calming. Petting an animal, known to reduce blood pressure, can also be calming and enjoyable for the person with Alzheimer's, and the soothing human touch has a similar effect.

Care away from home

Armed with pamphlets from the Department of Social Services, Dean's daughters began the search for an assisted care residence where Dean might live when she could no longer stay at home. We visited several--meeting with staff, touring the residence, and even having lunch in the dining room--and were generally pleased with all. Eventually, however, circumstances would dictate our choice.

On a cold night in January 1997, the police called at 2:30 AM to tell me they had found Dean wandering a mile away from her home in her gown, a sweater, and slippers. Fortunately she was still able to tell them her name, which was enough for the police. I immediately arranged for round-the-clock care at home, and soon after, for Dean's entry into the only residence in the vicinity licensed by the state to lock its doors to prevent residents from wandering.

During the 20th century, Debra Lacey notes, institutions providing care to individuals with dementia have changed from state mental hospitals, county almshouses, and an insignificant number of private boarding homes to an industry of some 16,000, mostly privately owned, nursing homes and residential facilities designed for the appropriate care of those with Alzheimer's and staffed by specially trained personnel.25 Institutionalization comes sooner for those whose families cannot care for them at home, and a study by D. William Molloy et al suggests that it might be avoided until later in the progression of the disease if more support resources were available for caregivers.26

Physical factors to be considered in choosing a residence include cost, security, comfort, attractiveness, facilities and activities for residents. Living units or wings should be small and homelike. Bo Malmberg reports a program in Sweden involving group homes for those with early-stage Alzheimer's--6-8 small apartments clustered around a common kitchen/living room--where residents are encouraged to help with cleaning and cooking.27

Perhaps more important, though, are staff training and philosophy of care. Alterra defines its mission as maximizing the quality of life and dignity of its residents and has as its guiding principles care, respect, understanding, and help. Stella Shallenberger, resident care coordinator of Dean's wing, prefers working with older people in long-term care because it allows her to know the residents and come to love them, and some of them come to love her as well. She says "I go home feeling fulfilled, knowing that I have made a difference. While I need and enjoy my time off with family and friends, I'm always eager to come back to work."

Willingness to innovate is most important for Alzheimer's care staff, and communication is one of the most important areas for innovation. Anne K. Vittoria describes an Alzheimer's unit in which the nursing assistants have developed what they call "our own little language," which allows them to reach out to the person with Alzheimer's and encourage response and interaction.28 M. Bahareethan and A. Shah address ways to deal with aggressive behavior, in particular, training staff to infuse their communication with Alzheimer's patients with care and respect.29 Diane Beach and Betty Kramer believe that communication can be enhanced through eye contact, gestures and touching, and short sentences clearly spoken.30 Nancy Kutner et al suggest that encouraging one-on-one conversation and friendship between residents and arranging small-group activities all serve to reduce agitation.31 A study by Berit Ingersoll-Dayton et al of 21 nursing home residents with behavior problems found that staff could learn much from families in how to handle particular patients' behaviors.32 Family involvement benefits everyone--patient, staff, and family. Bob Woods believes that those who manage services for persons with Alzheimer's or other dementia must develop "a culture where person-centered care may develop and flourish."33

Public awareness and social/government response

People around the world have become acutely aware of Alzheimer's and are not only demanding government response to find means to prevent or cure the disease but also developing social responses to afflicted persons and families in need. An Alzheimer's Association fact sheet reports research efforts described in presentations at the World Alzheimer's Congress, held in July 2000 in Washington, DC, and attended by 5,000 participants from many nations. Media reporting of such events and television specials and magazine/newspaper articles about Alzheimer's--whether about new treatment possibilities or individual experiences--have put the disease in the public eye and contributed to the social construction of the disease, which has been dominated by the medical approach.

This social construction can inform social policy and practice. The general long-term care policy has been that families are responsible for anything other than acute care of their elderly. However, J. M. Moriarity reports that in the UK, emphasis is being shifted to community-based services, especially care management services for home caregivers.34 Focus in the US has been on monitoring the quality & role of institutional and community-based care for people with Alzheimer's and evaluating the burden of care on family caregivers, but little monetary support is available. With the current population aging and recent advances in treatment of the disease, Rosemary Calder suggests that social policy should take a public health approach to aid medical research on Alzheimer's, while not neglecting the needs of those already affected by the disease.35 Another policy alternative is promotion of individual long-term planning--through savings, private insurance, and adoption of healthier lifestyles--with government responsible for educating citizens in this regard and providing some form of income replacement, suggests Rhonda Montgomery.36

At present, private long-term care insurance is prohibitively expensive for most people, Medicare provides very little for the type of care most needed--custodial--and Medicaid helps only those who have suffered financial catastrophe, often because of their medical/care costs. Judith Feder argues that, "despite political skepticism about providing this kind of care, Congress must prepare for this problem," convincing the public that some kind of social insurance is imperative.37 Specific recommendations by Stephen McConnell and Judith Riggs include a federal tax credit for home care, state development of adult daycare programs, and federal commitment to funding, through matching grant programs, states' development of service models and expanded services.38 Debra Cherry argues that need assessment and care management research and programs are badly needed and describes California's "Alzheimer's Disease Management Guidelines" to help practitioners.39

Funding for Alzheimer's research has increased with public awareness and demand. In large part because of the Alzheimer's Association's advocacy, private donations for research are increasing, and grants of half a million dollars or so for promising studies are being made by the National Institutes of Health. Another source of research funding is the Andrus Foundation of the American Association for Retired People, which has also sponsored a television series on aging.

Impact on society

According to Alzheimer's Association statistics, four million Americans have Alzheimer's, and 19 million have a family member with Alzheimer's. Unless a preventive vaccine, a cure, or better treatment drugs are found, 14 million Americans will be ill with the disease in 2050. The current economic impact of Alzheimer's on America is $100 billion a year for care (medical and custodial) and another $33 billion in work hours lost by caregivers. This does not include part-time home care and other costs paid for out of the pockets of caregiving families, which average $12,500 a year. Nor does it include expenses incurred in automobile accidents involving persons with Alzheimer's or home fires resulting from their impaired abilities in daily activities. The average lifetime cost per Alzheimer's patient may be more than the $174,000 estimated by the Alzheimer's Association. The Alzheimer's Disease Center at the University of Kansas Medical Center states that Alzheimer's is the fourth leading cause of death in adults, after heart disease, cancer, and stroke, but Richard Rogers and Robert Hummer claim that "multiple cause specifications regarding cause of death may (have led) to serious underestimation of the extent to which Alzheimer's affects the US population." 40

How to face the end--decisions, care, feelings

Even though Alzheimer's is a long-term disease, and it is known that the later stages will leave the person unable to make the simplest decision--or even understand the issue requiring a decision--far too few people are prepared for this eventuality. It is extremely important for the person to have "designated a trusted surrogate to make (end-of-life) decisions," says Ronald Martino. 41 The Advance Elder Care Family Planning model, reports Donna Cochran, was developed to empower families before they face these problems, helping them understand what advance directives entail. 42

Few assisted care residences for those with Alzheimer's are prepared to see the disease through to the end. A resident's need for actual nursing care often leads to transfer to a nursing home or return to the family home. Sheryl Zimmerman describes this lack of end-of-life care as a major deficiency in residential facilities, and notes that few have arrangements for joint care with local hospice staff. 43 The hospice philosophy is to make the process of dying as comfortable as possible, both for the person and for the family. While there are some care facilities, most often hospice staff come to the home, prepared to take care of almost everything--from visiting nurses and home health aides, to hospital beds and IVs, to volunteers who visit much as a friend would and give families a chance to take care of their own lives for a short time. Though limited to a period of the last six months of life, sometimes hard to gauge for Alzheimer's patients, hospice care is paid for by Medicare. The personal concern and understanding of hospice staff, however, cannot be measured in dollars and cents.

Bereavement over a loved one with Alzheimer's begins long before the person's death. It is a gradual process brought on by the loss, bit by bit, of one's former relationship with the person. However, this process need not be all negative. Caregiving family members and friends must be open to change, willing to establish a new relationship on a daily basis. They can find delight in the opportunity for communication of any kind--a smile or laugh, a touch or squeeze of the hand, or just a look in the eyes that seems to convey comprehension and thanks that someone loves and cares.

Our family does not know when or how we will face the end. We will grieve, but we have no right or reason to be sorry. And, afterward, we already have our plans for all those who love Dean to share in our celebration of her life, with recordings of her at the piano, works of art she created, and photographs portraying the rich life that she no longer remembers but we do.

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