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Dementia – Health Issues and Caregiver Burden

Definition of Dementia and Personal Experience

Dementia is not, despite widespread belief otherwise, a specific illness. Instead, Dementia is a term used to collectively describe a wide range of conditions that lead to cognitive decline, memory impairment, and other brain disorders [1]. The most prevalent form of Dementia is Alzheimer’s Disease, which is a debilitating illness characterized by progressive and catastrophic deterioration of certain parts of the brain and, resultantly, a decline in cognitive and physical function. Alzheimer’s is the fifth leading cause of death among elderly adults, as it is seldom seen before the age of 50, with 90 percent of all cases occurring after the age of 65 [2]. However, while the likelihood of Dementia is exacerbated by age, it is not a normal part of the aging process.

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Having my father diagnosed with Dementia, and specifically, Alzheimer’s Disease was disheartening. It came as a shock, not only to me but also to the entire family and friends groups. He was quite healthy for his age, with a regular schedule of exercise and meticulous in every single detail. Some months before his diagnosis, he had been exhibiting mild forgetfulness, which everybody attributed to the normal aging process. However, it gradually worsened, and he started losing his spatial awareness, confusion, lacked the initiative to exercise, and also problems handling change and basic everyday arithmetic. These conditions were also exacerbated by mood swings and aggression, which we, as his family, attributed to frustration. In context, he was an army veteran and fiercely proud and independent. However, over time, it became increasingly apparent that these may have been symptoms of an underlying condition, and he was taken for review. The diagnosis came back as Alzheimer’s Disease. The deterioration of his cognitive and physical function was devastating to the family unit as a whole. My father became increasingly dependent, and it was frustrating for himself as much as us.

The Movement from Cure to Care: How the Psycho-Social Dimensions Impact Those Living with Dementia

The psychological and social dimensions of Dementia are as devastating as the physiological effects of the disease. The psychological impact would exhibit right before the diagnosis, during the onset of initial symptoms. A person losing his autonomy, memory, and other cognitive abilities will often feel frustrated, anxious, and apprehensive. Reactions to the diagnosis are also highly varied on an individual basis, but the psychological impact cannot be ignored. Some of the more aggressive forms of Dementia, such as Alzheimer’s Disease, are often interpreted by people as a death sentence. Therefore, reactions to the diagnosis may include grief, apathy, anger, frustration, loss, shock, irritability, disbelief, aggression, and fear in the short term. In the long-term, absent proper support may evolve into depression and anxiety.

However, the psychological and social impacts of Dementia are not solely confined to the afflicted individual but spill over to their support structure, including family members, friends, and caregivers. The reaction to diagnosis may be very similar between the patient and their support system. It is, therefore, paramount that those diagnosed with Dementia, along with the people around them, are given adequate avenues to express their emotions and relay their fears. It is estimated that adverse psychological reactions to Dementia, termed as the Behavioral and Psychological Symptoms of Dementia (BPSD), affect up to 90 percent of Dementia subjects and their caregivers [3]. Further, while it has not been adequately delineated, BPSD may contribute to poor outcomes in the treatment and care [3].

The social impact of Dementia is profound in the lives of the patient themselves, as well as spouses, caregivers, partners, families, and friends. The ailment impacts the lives of millions who, in some way or form, provide support for people living with Dementia, whether that be in helping with charities and shopping, to providing 24hour care. The progressive cognitive impairment of a person living with Dementia inevitably results in a reduced ability to communicate coherently or undertake mundane daily tasks. BPSD can also be challenging to respond to accordingly. Therefore, the social impacts of Dementia may include the reduction of loss of employment, impairment of relationships, loss of time with family, friends, and social activities, social isolation, and the need to relocate to provide care. Further, while Dementia is more openly discussed in contemporary media, there remains little evidence as to whether the anecdotal assumptions about dementia patients have been reduced, which may lead to discrimination of patients and caregivers.

Treatment Differences in Urban and Rural Areas

There are extensive studies conducted relating to rural health disparities, especially in regards to mental health and access to care. The consensus is that patients diagnosed with Dementia living in rural areas are more likely to receive suboptimal care [4]. This is underlined by the fact that mortality attributed to Dementia in rural areas exceeded that of metropolitan areas by 11 percent between 2005 and 2009, given that there is no effective disease-modifying or preventative strategies against Dementia [4]. However, these figures may be disproportionately inaccurate, as rural populations comprise higher proportions of older adults, and may consequently be more susceptible to diseases of old age.

However, it is essential to understand the rural-health disparities, if any exist, in the diagnosis and health care delivery of Dementia patients. Prevalent studies outline that there is lesser uptake of government health insurance initiatives, such as Medicare and Medicaid, in rural areas as compared to urban areas in the US [4]. Resultantly, there exists more underdiagnosis of Dementia in these regions, with the diagnostic prevalent being 11 percent lower in rural counties [4]. Rural dementia patients may also face barriers to efficient ambulatory care and further experience unnecessary hospitalizations [4]. Therefore, even with a correct dementia diagnosis, individuals in rural areas may receive comparatively suboptimal healthcare delivery. Early diagnosis of Dementia also allows the opportunity for symptomatic treatments, as there is no proven disease-modifying treatment, participation in clinical treatment trials, the creation of long-term care plans, and sufficient estate planning. Therefore, the underdiagnosis prevalent in rural areas is an inherent compromise to follow-up intervention.

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Why multi-discipline rehabilitation is not typically offered

Ideally, the diagnosis, treatment, and support of patients with Dementia should be handled through a multidisciplinary structure that facilitates psychological support alongside the nurses, doctors, and caregivers. This psychological support should be availed not only for the patient but for the caregivers as well. Psychologists can also contribute to the training and of social care and health staff to support dementia patients, along with their family caregivers. Given the nature of Dementia and the lack of a disease-altering medication, many of the multi-discipline interventions are non-pharmacological. They may include primarily exercise and motor rehabilitation, occupational therapy, intervention for BPSD, complementary and alternative medicine, psychological therapy, and assistive technology and domotics.

However, these multidisciplinary interventions are rarely suggested and offered to dementia patients and family caregivers for various reasons. A significant reason is an economic and social impact of implementing these interventions, absent a reliable disease-altering medication. Therefore, this non-pharmacological therapy would be prescribed and tailored for each dementia patient, with a consistent review for progress and alterations over a relatively long period. This economic burden heavily deters the recommendation of multidisciplinary approaches to Dementia rehabilitation and treatment.

On the other hand, supporting evidence for most of the multidisciplinary, non-pharmacological interventions is still preliminary. Some studies do outline the statistical significance of some non-pharmacological therapy outcomes, but the clinical relevance of these interventions is still widely uncertain. As a result, well-designed, and closely monitored randomized control trials, implementing innovative and cutting-edge designs are necessary to ascertain the efficacy of the multi-discipline interventions on patients with Dementia. These tests may be unviable to many rural areas, significantly limiting their scope as well. Also, further review is required to provide robust neurobiological reasoning for the application of these interventions, and also ascertain a viable cost-efficacy profile to dementia patients. It is, consequently, perhaps too early in the adoption of the multidisciplinary approach to be widely advocated for and offered.

Conclusively, while Dementia remains a significant burden to patients and caregivers alike, the psychological and social effects of the disease will continue to be relatively profound until ideally such a time when a disease-altering medication regimen can be successfully invented and tested. In the meanwhile, further clinical testing to assess the efficacy, and cost profile of a multidisciplinary, non-pharmacological approach is highly warranted to preferably alleviate some of the burden of the disease in the future. Until then, the interdisciplinary approach remains unviable for a majority of the population, including disproportionately affected rural communities.

References

Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, Cooper C. Dementia prevention, intervention, and care. The Lancet. 2017.

Bjorklund BR, Bee HL. The journey of adulthood. Florida: Pearson; 2015.

Cerejeira J, Lagarto L, Mukaetova-Ladinska E. Behavioral and psychological symptoms of Dementia. Frontiers in neurology. 2012.

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Abner EL, Jicha GA, Christian WJ, Schreurs BG. Rural‐urban differences in Alzheimer’s Disease and Related Disorders diagnostic prevalence in Kentucky and West Virginia. The Journal of Rural Health. 2016.

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