Caregivers of individuals with Alzheimer's disease

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)

II. Middle Stage Alzheimer's

The middle stages of AD includes the emergence of difficult behaviors including "Anger, suspicion, overreacting and paranoia. The questions or statements of the individual become more repetitive during the middle-stage of the disease and there is more incidence of wandering or what is termed a 'sundowning' involving restlessness or agitation in the late afternoon or evenings. The individual develops a fear of bathing, eating problems, incontinence, hoarding of their belongings, especially paper, inappropriate sexual behavior, violent behavior including hitting, shouting, and arming themselves for protection. The individual requires help choosing their clothes and remembering to change clothes as well as help in getting dressed. The individual experiences difficulty with expressing themselves verbally and has spatial problems. The individual loses the ability to read, write, and use simple math and even has difficulty following a story line of a television show. During this stage, there is a loss of coordination, which leads to shuffling feet or gait problems. At this point, the individual will requires 24-hour per day supervision and may lose the ability to recognize their family and friends.

During the middle stage of Alzheimer's disease, the caregiver's role expands to full time meaning that the caregiver will need support. The caregiver deals with a great many challenging behaviors during this stage of the disease. The caregiver will many times feel isolated with feelings of grief and loss predominant and this means the caregiver needs to gain emotional support as well as being able to take periodic breaks from the heavy responsibilities of caregiving, which is of primary importance for the mental and physical health of the caregiver. The Family Care Navigator located at www.caregiver.org will assist the individual in locating the Area on Aging, which provides support for local community respite resources.

It is important that a safe and comfortable environment be provided for the caregiver and the individual with AD. The individuals' physician, the local Alzheimer's Association and the Area Agency on Aging are all able to provide a referral to a professional who is experienced in modification of the home and assistive devices. The individual with AD should register with the Alzheimer's Association Safe Return program. It is important that the caregiver for the individual with AD to have a release of information noted in the patient's medical chart so that the physician is free to speak with the caregiver.

The caregiver should develop a position relationship with the physician and other health care professionals so that they understand the role of the person as the caregiver and are open to their input and so that they work with the caregiver in the provision of medical care that is appropriate. It is important to understand that the stress of caregiving can adversely affect the health of the caregiver and that they should make sure that they access regular health care for themselves. The caregiver whose health seriously diminishes may need to seek alternative care options for the individual with AD such as a residential facility. Many residential care facilities have programs that are designed specifically for individuals with AD or dementia. The caregiver may also consider hiring in-home help.

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.