Alzheimer Effect on Families
Alzheimers disease (AD) is a debilitating disease that affects the physical and the cognitive function of the human body. It is a progressive disease that sometimes goes unnoticed until the individual suffering from it had made a remarkable indication that he had the said disease. A sample of the said indication is the sufferers deviation from his normal activity and is often strange and erratic. Sufferers will experience a gradual decline in memory and of other cognitive disabilities that becomes more noticeable and more apparent as the sickness progresses. Once an individual is diagnosed with the said disease, his life and that of his family will never be the same again. The sufferer will need constant care and attention from a family member who will take an active role as a caregiver. Most of the time, it is the immediate family who will take an active role in taking care of their sick family member. The family will make the necessary adjustments in their lifestyle and of their individual role in the family since the sufferer will no longer be reliable to take an active part on anything even on taking care of himself. Caregivers of AD are known to experience difficulties on their own, physically, emotionally, and mentally as they continue to care on their sick family which can lasts for years.
Caring for the sick comes with an emotional baggage. It is difficult to see a family member suffer and decline. It becomes more trying when a loved one is suffering from AD and the sufferer will manifests erratic behavior that will cause resentment to the primary caregiver. Forgetting even the name and of the significance of the caregiver to the sufferer will lead the caregiver to resent the sufferer. The feeling of being unloved and unvalued will take a toll on the caregiver. It often happens to a spouse caregiver wherein the AD sufferer is unable to recognize the name or the face of his spouse. The feeling of resentment will lead to depression especially if the said caregiver has no support group where he can voice out his sentiments and the challenges that comes with caring for a love one who is suffering from AD. The caregiver will also have a hard time adjusting to the behavioral changes of the sufferer, this will add to the stress and depression of the caregiver.
An early and highly sensitive issue for many people with AD dementia is limitation of driving privileges. In many cases, the persons freedom and self-perception are threatened by limits on driving. Especially in cultural traditions that emphasize independence, autonomy and control, relying on others for transportation can be perceived as demeaning. Moreover, driving can have tremendous significance as a symbol of individual freedom, and limitations can be an unwelcome sign of dependence.” (Garrard-Post, 2000 p. 47) The sufferer and his caregiver may often experience disagreement as the former would try to continue doing things on his own and is trying to be independent even if he is experiencing difficulties. The latter knowing the capacity of the sufferer will also try to take the reins from the former. This may lead to altercation and disagreements between the parties. More often than not, both parties will resent the other, these resentment will pile up until such time that it will no longer be contained. In time, signs of stress and depression will manifest in themselves, not to the sufferer but to the caregiver.
The reversal of roles or the changes of roles in the family occurs at the moment the sufferers sickness is diagnosed. The wife may take over the reins of running the household, the family responsibilities and of the family's expenses once the husband is diagnosed with the said disease. Children will have to take a designated role in running the household. Each of the members needs to be provided with a role. Some are given bigger tasks and responsibilities while others have lesser ones. The relegation of responsibilities can also lead to resentment which sometimes ends up in disagreements and of unearthing the past hurts. Coping up with the responsibilities and coping up with the changes takes time, and more often than not, there are instances that a family member is unable to cope with these changes. This may lead to depression and stress to the parties involved. Dealing with Alzheimers disease is such a divisive process that it seems appropriate to look at ways in which we can bring everything back together. Families become wretchedly fragmented over dealing with Alzheimers, because of the difficulty of caring for the person who has the disease and because of family members individual ways of interacting. ( Gray-Davidson, 1999 p.74)
The family may decide later on to entrust the care of their family member to the care of a Nursing Home. It is a difficult decision to make but the family has no choice on the matter especially if the insurance and the financial means are dwindling. It often happens in instances when the sufferer is the breadwinner of the family. To survive, the caregiver has to find work. With no one to take care of the suffering family member, the family will decide to entrust the care of the sufferer in a nursing home with facilities and caregivers to take care of the needs of the sufferer. The idea of sending the said member to a nursing home will also cause guilt to the family. They will try to cope up with it by going to the facilities whenever their time permits and sometimes experiencing time constraints in trying to juggle everything. A common belief is that institutionalization relieves the physical and emotional burden placed on caregivers. However, studies have shown that improvement in caregiver mental and physical health does not always follow. Families frequently experience guilt and anxiety about the decision. Commuting to the nursing homes places additional time commitments on spouses, and distance and cultural objects may further isolate friends and family once placement is made. (Perel, 1998)
Caregivers will tend to seek therapy of their own to cope up with the stress of handling the sufferers’ physical and cognitive decline not to mention the erratic behavior that tend to manifest from time to time. A study made by an immunotherapy program showed findings that “the strain of caring for someone with AD can cause family caregivers to use health care services at higher rates that non-caregivers of the same, including rates for emergency room visits, hospital use and doctor visits. The estimate $4,766 more annually in health care services for caregivers whose average age is 61 could become a substantial cost to Medicare when the caregiver turns 65. (Schulz and Cook 2011 p. 8)
The job of a caregiver is never ending. It is a twenty four hours a day, seven days a week job. It does not involve remuneration and it takes a lot of patience and will power to handle it. It is hard to understand the person who is suffering from it. The reversal of role will also take a toll on the caregiver especially if the one who is suffering from it somebody who has a bigger responsibility in the household, financially, emotionally and psychologically. The family may choose to hire a caregiver to take care of their sick family member. This will often occurs if all of the family members have families of their own. Resentment between the members occurs when they are unable to agree on the methods of caring for the sick and of the finances that will be used if insurances and Medicare is unavailable. However, it can be prevented if all the family members will have a formal talk and discuss the role that each one will take to support the other. The Family dynamic shifts over the course of the disease, such that the roles of the provider, decision-making and power are taken over by other members of the family. Alzheimers disease affects the whole family nucleus and not only the dementia patient. The disease leads to a family restructure and, as the disease progresses, greater care is required. At this point, early conflicts resurface and there may be resistance to assuming the roles, which in turn affects the quality of life of the elder as well as that of their families. (120 Cachioni, et al., 2011 p.120)
Caregivers of patients who are suffering from Alzheimer are feeling burdened and are manifesting depressive symptoms. The NYU Caregiver Intervention Program had made a considerable study to determine if counseling and support will reduce the symptoms manifested by the caregivers. Physicians should make it a practice to refer caregivers not only to support groups, but also to individual and family counseling where available. Replication in community settings of comprehensive counseling and support interventions has the potential to help caregivers weather the strain. (Gaugler, Roth, Haley & Mittelman 2008 p427)
Caring for the sick is a big responsibility. It takes a lot of patience and love not to feel depressed even at the thought of knowing that a love one is suffering from a disease that has a no known cure. It takes time to accept the reality while undergoing the necessary changes in lifestyle and of the environment. But men are known to be resilient. In time, he will be able to cope up with all the changes. Taking the primary role of a caregiver is a challenge. What the caregiver needs is someone to whom he can share his sentiments with, even if the said someone is a psychologist. If he will be able to relieve himself of the stress and he knows it is time to seek help or treatment, man will be able to bounce back and become whole again.
SOURCES & REFERENCES:
Cachioni, Meire, Lima-Silva, Thais Bento, Ordonez, Tiago Nascimento, Galo-Tiago, Juliana, Alves, Ana Regina, Suzuki, Milena Yuri, da Silva Falcao, Deusivania Vieira, Elderly Patienta with Alzheimers Disease and their Family Relationships, Dement Neuropsychol Vol. 5 (2), 2011
Garrard Post, Stephen, The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying, JHU Press, 2000
Gaugler, Joseph, Roth, David, Haley, William, Mittelman, Mary, Can Counseling and Support Reduce Alzheimers Caregivers Burden and Depressive Symptoms during Transition to Institutionalization Results from the NYU Caregiver Intervention Study, J Am Geriatric Soc. 56 (3) 2008 (p. 427)
Gray-Davidson, Frena, The Alzheimers Sourcebook for Caregivers: A Practical Guide for Getting Through the Day, McGraw Hill Professional, 1999
Perel, Valerie Denisse, Psychosocial Impact of Alzheimer Disease, The Journal of the American Medical Association, 279 (13) 1998 Retrieve from www.jama.ama-assn.org. Retrieved on May 7, 2012
Schulz, Richard, Cook, Thomas, Caregiving Costs: Declining Health in the Alzheimers Caregiver as Dementia Increases in the Care Recipient, Alzheimers Immunotherapy Program, 2011
