Dementia: An Overview (Preprint)

BACKGROUND Dementia is a serious terminal and irreversible disease that often does not receive attention from the public compared to other non-communicable diseases. This disease causes a decline in cognitive function in individuals and makes them have to depend on others for 5-20 years of their life span. OBJECTIVE The purpose of this paper is to provide an overview of dementia and other things related to this disease. METHODS The writing method in this article uses a narrative review on several scientific sources and journal articles published in 2011-2021 from several databases such as Google Scholar, CINAHL, ProQuest, PubMed, and EBSCO. RESULTS Dementia is one of the non-communicable diseases that can cause a high burden on individuals, families, communities, and countries as a result of the unproductiveness and total dependence of people with dementia on their surrounding environment due to the decline in body functions that occur. The caregiver burden experienced by caregivers includes physical, psychological, social and financial burdens. Support and assistance from professional health workers for people with dementia as well as caregivers and families can be provided through several efforts such as providing information related to illness, assistance in the care provided, providing counseling to prevent caregiver burdens and other problems, forming support groups for dementia caregivers, and advocacy for people with dementia and their families to get their rights. CONCLUSIONS Change efforts and policy making by the government that are more pro-people with dementia can change the perception that has been in society so far to be more positive and can potentially contribute to people with dementia.

Oral health issues of young adults with severe intellectual and developmental disabilities and caregiver burdens: a qualitative study

Background Oral health maintenance is difficult to be achieved alone by patients with special needs and insufficient self-care skills. This study aims to investigate how the oral health issues of young adults with severe intellectual and developmental disabilities (IDD) affect caregiver burdens. Methods A qualitative research method was employed with semi-structured interviews conducted with 14 maternal caregivers of patients with severe IDD. Eleven young adults had neurofunctional disorders and three had autism spectrum disorders. All recorded data were transcribed verbatim and subjected to thematic analysis. Results Three themes emerged from the main agenda: predisposing oral dysfunction, home care challenges, and professional treatment barriers. The severity of the disabilities had an impact on oral disease risks that increased as patients aged. Participants indicated that, among the daily living activities of their patients, toothbrushing was a particular hardship due to their dysphagia and behavioral issues. Factors impacting on dental treatment indicated by caregivers included social, emotional, and financial circumstances. Conclusions Dysphagia and behavioral issues of adult patients with severe IDD contributed to caregiver burdens in the dental care of the patients. Caregiver burdens and barriers to treatment were mutual factors hindering adequate interventions in dealing with dental problems of the patients.

Becoming a Family Caregiver to a Person With Dementia: A Literature Review on the Needs of Family Caregivers

Introduction The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed.

Filial Piety in a Modern Age

With an increasing number of Alzheimer’s disease patients in Singapore, complications related to the degenerative disease have become highly relevant. Standing out among these complications are inflated caregiver burden resulting from the cultural expectations associated with filial piety. Filial piety, a value ingrained in Chinese culture, requires adult-children to display love, obedience, and respect towards their parents as well as provide physical care when required (Bedford, 2019). Expectations associated with filial piety, however, have been associated with severe caregiver burdens that persist even after patient institutionalisation (Whitlatch, 2001). Expectations to provide care presents numerous challenges for adult-children of patients: economic instability, psychological exhaustion, and social isolation (Lai, 2009; Langda, 2011; Win, 2017). These implications associated with caregiving are heightened when the patient being cared for is diagnosed with Alzheimer’s, as the disease has a unique cognitive-degeneration component that inhibits an individual from conducting independent actions after a certain point (Pratt, 1985). This article aims to shed light on the relationship between the level of involvement and the severity of caregiver burden among familial caregivers of Alzheimer’s patients in an effort to identify how to better support familial caregivers of Alzheimer’s patients. Through the use of a quantitative correlational analysis, a relationship between the two data points of involvement level and burden level was established. This research serves to identify a potential problem, not propose methods of reconciliation. While the data collection process for this study was inhibited by the COVID-19 pandemic, theoretical data is provided in an effort to develop new understandings and draw hypothetical conclusions. Keywords: Alzheimer’s, Filial Piety, Familial Caregiver, Institutionalisation, Caregiving Burden, Correlation, Adult-Child Caregiver

Benefits finding among Chinese family caregivers of stroke survivors: a qualitative descriptive study

ObjectivesThe caregiving experience includes both caregiver burdens and benefits finding. However, the benefits obtained by family caregivers of stroke survivors in Chinese community dwellings are unknown. The objective of this study was to explore the benefits experienced by family caregivers of stroke survivors in Chinese community dwellings.DesignA qualitative descriptive design was used, fulfilling the consolidated criteria for the Standards for Reporting Qualitative Research reporting guidelines. Semi-structured interviews were conducted with 20 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Thematic analysis was performed to analyse the interview transcripts.Setting and participantsHome interviews were conducted with family caregivers of stroke survivors in two communities in Zhengzhou, China.ResultsThe family caregivers of stroke survivors experienced various benefits from caregiving. There were both internal benefits (increases in knowledge and skills, the development of positive attitudes, and the development of a sense of worthiness and achievement) and external benefits (family growth and gains in social support), which interact to create a healthy lifestyle.ConclusionOur findings provide a comprehensive perspective in understanding the benefits perceived by family caregivers of stroke survivors. This study provides insights into interventions focused on identifying benefits finding in six domains that may help reduce negative emotions and promote the mental health of caregivers.

Examining Factors Affecting Caregiver Burden: A Comparison of Frontotemporal Dementia and Alzheimer’s Disease

This study was conducted to compare the caregiver burden with regard to Alzheimer’s disease (AD) and frontotemporal dementia (FTD) and to determine the factors affecting the caregiver burden of patients with AD and FTD. A comparative descriptive study design was used. The sample consisted of 90 patients with AD and 44 patients with FTD and their caregivers. Sociodemographic questionnaire, Mini-Mental State Examination (MMSE), the Caregiver Burden Inventory (CBI), Neuropsychiatric Inventory (NPI), and Functional Activities Questionnaire (FAQ) were used. Descriptive statistics, t tests, χ2 test, and multinominal regression were used for analysis. No difference was found with subscales and the total score of the CBI, except time dependency scale. The total NPI and FAQ scores correlated significantly, and the MMSE score did not show a significant correlation with the AD and FTD caregiver burden. The presence and frequency of neuropsychological symptoms differ among patients with FTD and AD, and different symptoms affect the caregiver burdens in both groups.