Early Onset Dementia: Caregivers and Stress
While much research has been conducted on dementia, particularly the supreme focus upon dementia by the National Institute for Health and Clinical Excellence (NICE), there still is a marked dearth of information regarding early onset dementia (Jefferies & Agrawal, 2009). This is no surprise: dementia is generally viewed as a disease of old age. However, overlooking the significance and implications of Young Onset Dementia are dire. Young Onset Dementia (YOD) is defined affects 2.2% of the population under the age of 65 in the United Kingdom. Yet, there's still reason to believe that this number is actually even higher as 2.2% is simply the sum of the referrals to mental health services; it's more than likely that there are large numbers of undiagnosed members of society with this condition.
Generally, those who are undiagnosed, receive informal caregiving delivered by family-members, organisations such as their church, friends, and neighbours, when they find they are unable to by care for themselves (National Family Caregivers Association, 2002). However, for the clarity of this paper, caregivers will just refer to the spouses of people with YOD. Clinicians who deal with all forms of dementia have often found that caregivers are the "hidden patients" or the "forgotten patients" of this condition as they too are at risk for a host of issues as a result of their stress and burden: depression, stress, social isolation leading to self-medicating their worries with alcohol or other substances (Lane, McKenna, Ryan, et al., 2003). In addition to this, caregivers providing high levels of care are twice as likely to be permanently sick or disabled. Accordingly, 625,000 people have health problems because of these caring responsibilities.
At this time, there is not only a scarcity of awareness in the general medical community, but there is also a lack of relevant services for these individuals -- both those with dementia and those who take care of them. The NICE have acknowledged the impact of dementia on relationship as a central standard of care and more research needs to be conducted (Daniels, Lamson and Hodgson 2007). Moreover, it is imperative that investigators endeavour to heighten our understanding of the lived experience of dementia. Such findings can then be developed into suitable and effective interventions that encourage those with dementia and their relatives, empowering both to live better with the disorder as stipulated by the Department of Health in (2009).
Background, Purpose and Justification of the Study
Dementia is an umbrella term used for a group of symptoms caused by an array of brain disorders. There are several diseases that end in the onset of dementia; however, the most prevalent of these illnesses is Alzheimer's disease. Individuals with (EOD) have different needs from those with late onset dementia (above 65 years). Some of these needs might be the ability to maintain employment during their diagnosis; being responsible for their offspring and responsible to their financial obligations.
Either way, a diagnosis of dementia is a distressing experience. For the person involved, it entails the gradual but unavoidable loss of independence owing to the decline of cognitive and decision- making capabilities, deterioration of physical functions, memory and personal identity. For the caregiver, it entails witnessing the slow loss of the individual whom they have known and cherished their entire lives. As a caregiver, such a process can be truly traumatic, not to mention exhausting. One needs to constantly be planning the care needs for their loved one. EOD patients and careers often are passed on between neurology and psychiatry, and also between elderly care and liaison mental-health services. The responsibility for finding accessible and suitable support is frequently left with the caregivers. This results in preventable postponements, causes unnecessary distress to patients and puts an additional burden on caregivers. Therefore, conducting a study in which caregivers can participate in the exploration and development of support-interventions will provide valuable knowledge which can aid in forming a basis for the planning of different supportive network for both caregivers and (EOD) sufferers.
The inspiration for this research study in EOD began during placement in a mental-health inpatient unit. In addition to witnessing the anguish felt by the patients with EOD and their caregivers, the lack of nursing support was evident. It was well apparent that there needed to be an EOD-focused service which was prominent. An increasing number of authors, researchers and health care professionals have become aware of the need of developing strategies which effectively address the needs of both EOD patients and caregivers.
However, none have examined interventions to meet the needs of both parties and no identified research has used participatory action research...
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