Alzheimer's disease progression and caregiver support strategies

caregivers of individuals with AD

Caregivers of Individuals with Alzheimer's Disease

Alzheimer's disease is a terribly debilitating disease that strikes older adults and for which there is no known cure. According to the Institute on Aging, Alzheimer's disease is "an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually even the ability to carry out the simplest tasks." (2012, p.1) Alzheimer's disease is named after Dr. Alois Alzheimer. Dr. Alzheimer is reported to have noted changes in a deceased woman's brain tissues that had passed away with an unusual mental illness, which had symptoms of "memory loss, language problems, and unpredictable behavior." (Institute on Aging, 2012, p.1) Her brain contained abnormal clumps, which are now referred to as amyloid plaques and tangled bundles of fibers now called neurofibrillary tangles, the two main features of Alzheimer's disease. The third feature of Alzheimer's disease is the loss of connections between nerve cells or neurons in the brain. (Institute on Aging, 2012, paraphrased) The following illustration shows the changes in the brain of the individual with Alzheimer's disease.

Figure -- Changes in the Brain with Alzheimer's disease

While it is not known how the process of Alzheimer's disease beings it is reported that damage to the brain beings a decade or so prior to the problems becoming evident. Common behavioral symptoms of Alzheimer's include "sleeplessness, agitation, wandering, anxiety, anger, and depression." (Institute on Aging, 2012) Providing care for an individual with Alzheimer's disease carries "high physical, emotional, and financial costs. The demands of day-to-day care, changing family roles, and difficult decisions about placement in a care facility can be hard to handle. Researchers have learned much about Alzheimer's caregiving, and studies are helping to develop new ways to support caregivers." (Institute on Aging, 2012)

Becoming well informed about the disease is one important long-term strategy. Programs that teach families about the various stages of Alzheimer's and about flexible and practical strategies for dealing with difficult caregiving situations provide vital help to those who care for people with Alzheimer's." (Institute on Aging, 2012, p.1)

I. Early-Stage Alzheimer's

The early stage of Alzheimer is characterized by the individual having trouble with remembering recent conversations or events and results in them asking the same questions over and over or repeating stories. The individual loses the ability to manage their finances, and makes mistakes writing checks. The individual withdraws from social situations and has general apathy and trouble initiating an activity. Cooking and shopping become more difficult and the individual may leave pans burning on the stove. The behavior of the individual is characterized by poor judgment and has difficulty in making wise decisions being easily swayed by others. The individual tends to lose things and forget things even when carefully putting them away. The individual is disoriented in familiar surrounding and gets lost easily. The individual's driving is compromised and it is difficult when driving unfamiliar routes. The individual denies that anything is wrong. Caregiving during this stage is made easier by the caregiver becoming more knowledgeable about the disease. The caregivers should find other caregivers to talk to about the experience. It is common for the caregiver in the early stage of the disease to take the behavior of the individual with Alzheimer's disease personally. The individual with Alzheimer's may not even remember that they have been diagnosed with Alzheimer's. The caregiver needs to establish appropriate emotional support and can do so through counseling, a support group, or other members of the family. The stated 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." (Family Caregiving Alliance, 2012, p.1) As the Alzheimer's 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 (e.g., learning how to drive, recruiting volunteer drivers from among family and friends, using public transportation or paratransit). 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." (Family Caregiving Alliance, 2012, p.1) In the area of finances, Alzheimer's disease is very costly and there is emphasis placed on setting strategies for meeting the financial demands placed on the family of the individual with AD as the disease progresses. Financial planning includes a review of insurance coverage including health, disability, and long-term care. Medicare does not pay for long-term or custodial care however; Medicaid does care for those living on a limited income for those who qualify. Health insurance counseling is free to seniors and can be located in the individual's community by calling the Eldercare Locator at 1- [HIDDEN] . The individual with AD will need to assist in making medical, financial, and other important decisions about who will make provision for their care. It is important to complete legal documents early in the progression of AD while the individual is still mentally deemed capable of signing legal documents. Reported is "A Power of Attorney for Finances and Power of Attorney for Healthcare (Advanced Health Care Directive) can ensure that the person with AD is cared for by trusted family members or friends. Without these documents, caregivers may have to petition for conservatorship through court proceedings in order to get the right to make decisions on behalf of the person with AD. The family may also lose access to bank accounts if a member is not co-named on the account(s). Clear legal documentation can help prevent someone from attempting to take advantage of or lay claim to financial resources for their personal gain." (Family Caregiving Alliance, 2012, p.1)

III. The Late Stages of Alzheimer's Disease

The late stages of Alzheimer's disease involves the loss of the ability to communicate and the inability to recognize people, objects and places. The individual needs full assistance with all personal care during this stage, losing the ability to walk or to smile with muscles becoming contracted. The individual may lose the ability to swallow and may have seizures. The individual with AD experience weight loss and spends most of their time sleeping and may "exhibit a need to suck on items" experiencing incontinence of both bladder and bowel functions. (p.1) The caregiver of the individual with AD may often lose sleep due to disruptions in their regular sleep patterns. A study reported in the work of McKibbin, et al. (nd) examined the differences in objective and subjective measures of sleep between caregivers of individuals with AD and noncaregviers. The study states findings that "nighttime sleep is shorter but not otherwise disrupted in caregivers of patients with moderate to severe AD compared with noncaregivers. However, older caregivers are more vulnerable to the effects of sleep disruption since that have more trouble falling back to sleep after they are awakened. Caregivers should give consideration to placing their loved one in a skilled nursing facility at this stage of Alzheimer's where they individual with AD can receive adequate care and management of the disease. Hospice services including support groups, visiting nurses, and pain management, all of which are arranged through the managing physician are generally not made available until the physician feels that the patient has only six months to live.

IV. Metlife Study of AD Caregiving Experience

Metlife conducted a study in 2006 on caregivers of those with AD and states findings that include the following:

(1) Alzheimer's disease caregivers provided an average of 47 hours of care weekly, compared to 33 hours by caregivers for physically impaired individuals;

(2) Individuals with Alzheimer's disease needed more help with personal care tasks known as Activities of Daily Living (ADLs), more assistance with activities such as transportation, shopping, managing finances and cooking known as Instrumental Activities of Daily Living (IADLs) and more hours of companionship care (including supervision for safety);

(3) On average, an individual with Alzheimer's disease had 12.3 limitations (3.8 ADL and 8.5 IADL), compared to 10.7 for the physically impaired (3.3 ADL and 7.4 IADL);

(4) Compared to peers caring for people with purely physical impairments, caregivers of persons with Alzheimer's disease experienced more stress on all measures;

(5) Caring for someone with Alzheimer's disease added 13.5% to a caregiver's stress;

(6) While caregivers generally reported that they were in good health, over 32% of Alzheimer's caregivers indicated that their health had gotten worse because of caregiving compared to under 22% of those caring for a physically impaired family member;

(7) Individuals caring for a family member with Alzheimer's disease were 45% more likely to report that caregiving had caused their health to worsen than those caring for a family member with a physically disabling condition;

(8) Spouses of individuals with Alzheimer's disease were at the highest risk of quitting work due to caregiving responsibilities -- 10.6% had left their jobs to provide care, compared to 4% of the other caregiving spouses;

(9) Almost all working family caregivers had rearranged their work schedules. Taking time off without pay to provide care was a common disruption for non-spouse caregivers. (Metlife Study, 2006, p.2)

The Issues on Aging Journal article entitled "Helping Home Caregivers of People with Alzheimer's Disease and Related Disorders" reports strategies that will assist the caregiver of the individual with AD in coping with the disease and its symptoms. Included are strategies on coping with agitation experienced by the individual with AD, as well as a great many other strategies that are useful to the caregiver of the individual with AD.

Summary and Conclusion

The individual who provides care for the person with Alzheimer's Disease is under a great deal of mental and emotional stress and should seek assistance in the provision of care so that they do not harm their own physical or mental health in the process of providing care to the family member with Alzheimer's Disease. There are various agencies that can provide assistance or provide referral to agencies who can assist in the caregiving of the individual with Alzheimer's Disease.