Alzheimers_and_the_Caregivers_Health_Issues

Deborah Johnson | Alzheimers | Caregiver Health Issues | | | 11/30/2010 | The Caregivers of those with Alzheimer’s fall prey to their own health issues, and need to find their own support groups. | ALZHEIMERS DISEASE Alzheimer disease is one of the leading causes of death in the elderly. Five million Americans have Alzheimer’s and it is expected to reach twenty million within fifty years. Alzheimer’s is a progressive, degenerative brain disorder that causes memory loss, confusion, and difficulties in carrying out simple everyday tasks. The nerve cells in the brain are destroyed; the neurotransmitter acetylcholine breaks down causing interaction between parts of the brain to deteriorate. (Paul M. Insel, 2010) There are two types of Alzheimer disease, Early-Onset and Late-Onset. The progression of the disease is the same for both Early-Onset and Late-Onset. Scientists have not identified the cause of Alzheimer’s disease, but age is the chief risk factor followed by inherited gene mutations. It is suggested the same factors associated with heart disease also applies to AD. An alteration in the protein apolipoprotein E, and the peptide Molecule amyloid-beta may also be a cause of the disease. Alzheimer’s can not be confirmed until the patient has died and an autopsy is performed. Patients become unable to tend to their own hygiene and can become very hostile. Eventually the Alzheimer patient requires a care-giver, and as a result the care-giver will in turn develop their own set of problems. EARLY ON-SET ALZHEIMERS Early-Onset Alzheimer disease is generally defined as occurring before 60 years of age. There are three known gene mutations that cause early-onset Alzheimer. The first of these genes to be identified was the amyloid precursor protein gene, located on chromosome 21. Mutations in this gene cause excessive cleavage by the ß- and.-secretase enzymes, instead of normal cleavage by the a-secretase enzyme. The result is increased production of toxic ß- amyloid fragments, which are converted into insoluble aggregates that form senile plaques in brain tissue (Figure 1 and Figure 2). Two other genes that cause familial early-onset Alzheimer’s disease are presenilin-1, located on chromosome 14, and presenilin-2, located on chromosome 1. Both of these genes are involved in the –secretase complex, and mutations lead to excessive cleavage by the - secretase enzyme, which results in increased production and accumulation of ß-amyloid fragments (Figure 1). These mechanisms are not known to be associated with late-onset Alzheimer disease only Early-Onset Alzheimer. (Patterson, 2008) LATE ONSET ALZHEIMERS Late-onset and Early-onset Alzheimer’s have the same symptoms and progression, but the trigger is believed to be different. Late-onset Alzheimer’s disease also known as “Sporadic Alzheimer’s” is the most common form of the disease, and develops over the age of 65. There appears to be no genetic factor to cause Late-onset Alzheimer’s, but scientists have discovered two genes they believe may be risk factors. The Apolipoprotein E (ApoE) gene found on chromosome 19, has a positive and a negative effect; the e4 type is found to carry a higher risk of Alzheimer’s, but the e2 type is believed to protect against Alzheimer’s. (Late-Onset, n.d.) The sortilin-related receptor 1 gene (SORL1) is involved in amyloid precursor protein processing, which provides additional support to the role of the amyloid cascade in the pathogenesis of Alzheimer disease, but the benefit of SORL1 in clinical risk assessment has not been determined, and testing is not available for this gene at this time. (Patterson, 2008) CAREGIVERS EXPERIENCE HEALTH ISSUES AS A RESULT OF ACTING AS CAREGIVERS Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Studies have shown that depression is two times higher in caregivers of Alzheimer’s patients, over the general population, and is the main focus of concern. Finding better ways to support family caregivers is a major public health challenge. (NIH-PA, 2008) According to Austrum (2010) caregivers also experience the following: Denial: making excuses for patient; attributing problems to other causes Over-involvement: compensating for the patient’s losses Anger: embarrassment caused by patient’s behavior problems; frustration over the inability to halt the disease progression; anger because of the care-giving burden; displaced anger toward other family members or health care professionals Guilt: over the inability to accommodate patient’s behavior and care needs; suppression of negative feelings often associated with caregiver depression Acceptance: of the diagnosis and appropriate grieving (Burton Ly, 1997) Family disruptions: role changes; role overload; family conflicts Psychological stress: resentment; anger; deterioration of patient; other demands; self-blame; loneliness, depression Physical fatigue: care-giving demands of a deteriorating patient Social isolation: lack of time and energy; embarrassment over patient’s behavior leading to an avoidance of friends and social situations Financial issues: reduced income of patient or caregiver; medical expenses; anxiety about long term care costs Legal issues: mental competence of patient (Burton Ly, 1997) In a study conducted by Roth (2008) on four latent constructs (depression, well-being, interpersonal problems, and somatic symptoms) he found differences on three of the four latent factors in the African American, Caucasian, and Hispanic caregivers. In regards to differences in depression among caregivers of dementia patients, he found African Americans to be less depressed and in better health than White caregivers; White caregivers had better health and less interpersonal problems than the Hispanic caregivers. The Somatic Symptoms factor showed no differences between the races, and the African American and White caregivers did not vary on the interpersonal symptom dimension. According to Yap, (2005) there is no standard for family care giving, but the family remains to be the prominent caregiver. Usually the spouse provides the care, preceded by the daughters, daughters-in-law, sons and siblings. The health of the person with dementia and the caregiver are closely connected. The more the caregiver is depressed, the more likely the patient is to be depressed. Psychosocial research has suggested that quality care can bring to bear a positive impact on the disease; therefore, the care of the caregiver is as crucial as the care of the dementia patient. In the care of those with dementia, there are always two clients; the patient and the caregiver. GETTING THINGS IN ORDER TO HELP WITH STRESS FOR THE PATIENT AND CAREGIVER In the early stages of dementia the patient may not be diagnosed with Alzheimer’s disease, so he or she may still be cognitive enough to make decision regarding medical, legal, financial and social service information; therefore, when the diseases is diagnosed as Alzheimer’s the decisions for care has been made. This is the time for the patient to get his/her wishes on paper. The patient and family member should visit with a social worker, so that he or she can direct them to the appropriate people to help with medical and financial issues. A visit to the doctors to go over the doctors suggested medical plan, and to designate the person who will be making the decision for the patient when he or she is no longer able to do that for his or herself. A visit to a lawyer to get financial obligations organized, and to determine who will have “Power of Attorney” is important. Taking care of these responsibilities early on will help to eliminate some of the stresses from the patient, family members, and the caregiver. BURDENS OF CAREGIVERS Burdens are broken down into Objective burdens and Subjective burdens. Objective burdens are defined as the time and means required for one to attend to another, and include disruptions in relationships, life role and finances. Subject burdens are the emotional effect and distress involved in care giving. (LKP Yap, 2005) It is important that the caregiver seek care for their health physically, mentally, and emotionally; Day Care and outside care givers can be useful to eliminate some of the stress and responsibility of caring for the AD patient. A possibility for the caregiver is to seek out additional care for the patient. Another family member may be able to relieve the caregiver, or a health professional may come in for the day to care for the patient. If at all possible, sending the Alzheimer’s patient to a day care center is ideal. In the early stages of dementia the patient may engage in unsafe actions (cooking, driving, walking), and have difficulty communicating with others. This is a stage where the patient can become very unreasonable and deny their condition. In order to eliminate some of the stress and burden from the caregiver, a day care center is a safe alternative for the patient. The patient can benefit from the interaction with others and maintain some independence. In turn the caregiver can have the day away from the patient and the stress involved with the care of the patient. Caregiver burden is an all encircling term to capture the impact of a variety of factors that cause strain, stress and grief to caregivers looking after persons with dementia. (E.H. Tompson, 1982) As the Alzheimer’s patient progresses in his or her disease they will become more dependent on the caregiver to provide for their everyday needs. For some caregivers this is a time when they may begin to become angry and resentful toward the patient and other family members. This could be caused by the lack of help and concern from others, and just being angry that this is happening to their family member. Many caregivers, especially those that are family members, tend to cut off themselves from others. One reason they do this is because the Alzheimer’s patient can be embarrassing, and because they don’t have time because of the time they have to spend taking care of the patient. (Austrom, 2010) Estimates indicate that there are more than 10 million adult caregivers of persons with dementia, two thirds of who experience some form of sleep disorder during the path of their care giving career. (McCurry, 2007) There are three chief contributors to caregiver sleep disturbance; disruption caused by the patient’s inability to sleep, burdens and depression that the caregiver can not get off his or her mind at night, and the health of the caregiver. These are the times that the caregiver might seek out a counselor or a support group so that he or she can discuss what is happening to him or her. ADDITIONAL SUPPORT FOR THE CAREGIVER In order for the caregiver to properly care for the person with dementia, he or she must take care of themselves first. If you are new at providing care to an Alzheimer’s patient, than you will want to start at the beginning and learn about Azheimer’s disease. The Alzheimer’s Disease Education & Referral Center (ADEAR) (http://www.alzheimers.org/) provides up-to-date information on Alzheimer’s disease, and information for the family and caregivers. The Alzheimer’s Association (http://www.alz.org/) is a voluntary health organization that provides information and care consultation, funds for research, and more. They have produced a brochure on “Living With Early-Onset Alzheimer’s Disease” (http://www.alz.org/resources/factsheets/brochure_livingwithearlyonsetad.pdf). The Alzheimer Research Forum is a nonprofit site that serves the scientific and clinical research community as well as the general public, and they have a section on care giving. (http://www.alzforum.org/) NIHSeniorHealth.Gov includes sections on residential care and care giver support. MedlinePlus (http://www.nim.nih.gov/medlineplus/spanish/alzheimerscaregivers.html) has information in Spanish for the Hispanic community. The Fisher Center for Alzheimer’s Research Foundation (http://www.alzinfo.org/) has an online community that includes the use of chat rooms, message boards, and an array of online databases of information on Alzheimer’s Disease. CONCLUSION Researchers have performed many studies on the caregivers of Alzheimer’ patients, and found the caregivers suffer from depression, health, social problems, and have difficulty sleeping. These conditions put the caregiver’s health at risk. They find care for the caregiver to be as important as care for the dementia patient. Austrom, M. G. (2010). Long Term Caregiving: Helping Families of Persons with Mild Cognitive Impairment Cope. NIH-PA , 392-398. Burton Ly, N. J. (1997). Preventive Health Behaviors Among Spousal Caregivers. Prev Med , 26, 162-169. David L. Roth, M. L. (2008). 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Insel, W. T. (2010). Core Concepts in Health Eleventh Edition. New York: McGraw-Hill .