Mini Review - (2022) Volume 12, Issue 7
The increase in life expectancy of the elderly continues to increase, which has implications for the increase in the incidence of Alzheimer's dementia in the elderly. The elderly with Alzheimer's dementia will experience changes that cause them elderly to be different from their previous personality and behaviour. This will be a burden for the family.
Purpose: this study was to obtain an overview of families' experiences in caring for the elderly with Alzheimer's dementia.
Method: used is a scoping with conducting a focusing review with the PEOS framework (Population, Exposure, Outcome and Study Design), conducting literature searching using relevant databases. select relevant studies, perform data extraction, analyze and report results. PRISMA Flowchart (Preferred Reporting Items for systematic reviews and Meta-Analyses) was used to describe the literature search flow.
Results: 8 literature were selected, and positive and negative themes emerged. The upbeat theme is that religious and cultural beliefs patiently cause families to care for the elderly with Alzheimer's dementia. While the negative themes that emerged were Caregiver experiences (emotional and psychological), Loss and stress.
Conclusion: The most common theme in this study is a negative theme, so it is necessary to be aware of the importance of mentoring and support assistance for families who care for the elderly with dementia.
Family • Experience • Elderly • Alzheimer's dementia
Life expectancy in Indonesia continues to increase, along with the number of elderly people. In 2000 the elderly population reached 7.28% and increased in 2020 to 11.34%. This increase in the number of elderly should be watched out for because there may be an increase in diseases caused by degenerative processes, such as Alzheimer's. If the elderly with Alzheimer's cannot live independently, it will become a burden for the family. The worldwide incidence of Alzheimer's dementia is increasing rapidly. It is currently estimated to approach 46.8 or 50 million people diagnosed with dementia worldwide, and 20.9 million in the Asia Pacific (Alzheimer's Disease International, World Health Organization, 2017). There are about 10 million new cases every year. In Indonesia alone, it is estimated that there are around 1.2 million people with dementia in 2016, which will increase to 2 million in 2030 and 4 million people in 2050 [1].
Elderly with Alzheimer's dementia will experience memory impairment on things that have just happened, difficulty focusing, unable to do usual daily activities, experiencing disorientation or confusion over time, some difficulty understanding visuospatial, communication problems, putting things away -personal items are not in place, to make wrong decisions, withdraw from association until there is a change in behavior and personality. Changes in the elderly who are so different from their previous personality and behavior, of course, will be troublesome for the family who takes care of them and will be a burden to the family [2].
Caring for someone with Alzheimer's disease is a unique experience and not an easy one. Challenges in caring for the elderly can lead to stressful conditions because they have to deal with changes in the behavior and personality of people with Alzheimer's. Daily activities such as bathing, dressing, and eating, which can be done quickly, become difficult for sufferers. Families as caregivers for people with dementia at home tend to experience bio-psycho-socio-cultural-spiritual friction during the treatment process. Conditions of physical and psychological exhaustion, changes in roles and relationships in daily life, and the lack of knowledge of the caregiver's family about the condition of dementia experienced by family members can affect the quality of care for people with dementia [3].
The method used is scoping review. Scoping review is used to identify in-depth and comprehensive literature obtained through various sources with various research methods and has relevance to the research topic [4]. This review uses a methodology for clustering review as suggested by Arksey and O'Malley (2005) and further developed by Levac [5]. There are four reasons to conduct a scoping review:
1. To examine the scope and nature of the research activity, and
2. To determine the value of conducting a full systematic review.
3. To summarize and disseminate research findings, and
4. To identify research gaps in the existing literature.
The stages carried out in this scoping review consist of:
1. Identifying the focus of the review,
2. Developing a review focus and search strategy using the PEOS (Population, Exposure, Outcome, and Study Design) format,
3. Identifying relevant studies,
4. Mapping data using PRISMA Flowchart (Preferred Reporting Items for Systematic reviews and Meta-Analyses)
5. Data Extraction by compiling, summarizing and reporting the results and discussion.
Step 1: Identify the focus of the review
Using the question "How is the family's experience in caring for elderly clients with Alzheimer's?” For this study, scooping review was defined as a research synthesis that aims to map the literature on the topic of family experiences in caring for elderly clients with Alzheimer's and identify key concepts, research gaps, and as a source of evidence to inform practice, policy, and research about families caring for the elderly with Alzheimer's.
Step 2: Develop a review focus
Using PEOS In developing a review focus and search strategy, the researcher uses the Population, Exposure, Outcome, and Study Design (PEOS) format in managing and solving the review focus. The use of PEOS assists in identifying key concepts in the review's focus, developing appropriate search terms to describe the problem, and determining inclusion and exclusion criteria. The focus of the search for articles is qualitative research, so PEOS is considered appropriate to use [6] (Table 1).
Table 1. Framework PEOS.
| Population | Exposure | Outcome | Study Design |
|---|---|---|---|
| Family Care-Giver Family | Elderly with Alzheimer Elderly with Dementia | Experience Perspective insight | All research studies /study designs related to the experience of family/caregivers with the Elderly with Alzheimer |
Step 3: Identify relevant studies
The article search strategy was developed using several databases. The database used is Google Scholar, Pubmed, and Proquest. The data were filtered according to the criteria that the researcher determined. The data filtering process uses PRISMA Flowchart. PRISMA is the Preferred Reporting Item for Systematic reviews and Meta-Analyses, developed to assist authors in reporting Systematic Reviews (SR) and Meta-Analyses (MA) [7]. The selection of studies was determined using the inclusion and exclusion criteria. The exclusion and inclusion criteria are as follows (Table 2):
Table 2. Scoping review inclusion and exclusion criteria.
| Inclusion criteria | Exclusion criteria |
|---|---|
| Research journal in 2022 Quantitative and qualitative research A systematic review, meta-analysis | Book Research journal under 2022 |
The following are the filtering steps (Figure 1).
Figure 1:Exclusion and inclusion criteria
Step 4: Mapping data
Data from 8 articles were extracted to include critical criteria such, as study population, research objectives, methodology, and significant findings or recommendations. The authors independently recorded the information and then compared the extracted data. The author also consults with the supervisor until all content is analyzed and becomes a theme.
Step 5: Compile, summarize and report the results and discussion
Similar to Levac et al., the authors used a three-phase approach to compile, summarise, and report the results. First, a descriptive numerical analysis includes the number of articles, year of publication, and type of study. Second, strengths and weaknesses in the literature were identified through a thematic analysis of the studies included in the report. The final phase of this stage is a review of the implications of the findings concerning future research, practice, and policy [5] (Tables 3-5).
Table 3. Summary of Articles.
| No | Title, author, country | Amount sample | Method | Result |
|---|---|---|---|---|
| 1 | Experience of UK Latin Americans caring for a relative living with dementia: A qualitative study of family carers [8] | 11 family carers | qualitative interviews | Four main themes emerged: 1. Family comes first, especially for older people, leading to an obligation to care. 2. Dementia is considered an illness that is accepted and talked about, regarded as positive with close networks but not with broader society. 3. Challenging behaviors are not the responsibility of the person with dementia, who is often conceptualized as a child. 4. Caring expectations lead to incompatibility with legal services and a reluctance to leave. |
| 2 | The Experience of Alzheimer’s Disease Family Caregivers in a Latino Community: Expectations and Incongruences in Support Services [9] | with 24 Latino ADRD caregivers | qualitative interviews virtual | The greater insight into Latino caregiver experiences sheds light on specific structural and systemic problems with the existing caregiver support networks. Even though Latino families have very distinct ideas about care, by preserving familism, there is a propensity to overlook ways they might be better supported in providing care and fall into the "cultural trap." The belief that the family should serve as an older adult's natural support structure could cause the health and social systems of care to disregard the unique requirements of the Latino population. |
| 3 | Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic [10] | 21 family caregivers | qualitative interviews virtual | Ten main themes were identified, including (1) caregiver experiences (emotional and psychological), (2) dementia patient responses (emotional, psychological, and behavioral), (3) dementia patient cognition, (4) loss, and (5) future concerns, (6) reliance, (7) learning to the caregiver, (8) rewarding aspects of caregiving, (8) caregiver perspectives, (9) caregiver perspectives, and (10) care strategies. Before and during the epidemic, caregivers described numerous difficulties in providing care. Acceptance and efficient care techniques are required to improve the well-being of families with dementia. |
| 4 | Sociocultural insights on dementia caregiving in Arab and Muslim communities: the perspectives of family caregivers [11] | 32 family | qualitative interviews | Seven emerging topics from the research shows how the experience of providing care intersects with many societal, religious, and emotional influences: Reasons and motivations for providing care, the role of the extended family, socio-demographic characteristics of caregivers, their responsibilities, and how these intersect, socio-religious attitudes toward providing care for the elderly, social stigma, firsthand experience with ADRD, and coping mechanisms are just a few of the topics covered. |
| 5 | Exploring Coping Strategies and Barriers in Dementia Care: A Mixed-Methods Study of African American Family Caregivers in Kentucky [12] | 28 caregiver | mixed-method design | Over 90% of survey respondents stated that they offer care to assist family members and out of religious conviction, which supported these themes. The focus group data indicated three barriers: time limits, a lack of support, and the high expense of proper care. However, more than half of the carers expressed stress due to these three factors. |
| 6 | Experiences of older immigrants living with dementia and their carers: a systematic review and meta-synthesis [13] | 18 item | Meta-analysis | The five synthesized conclusions are living with dementia and caring for others; impediments to dementia care services; stigma and prejudice; and legal and financial difficulties. Elderly immigrants with dementia and their families face numerous difficulties due to living with dementia and providing care. However, it appears that there is very little difference between the experiences of immigrants and those born and raised in the same nation; the only distinction is in the ability to access and utilize the resources offered. |
|
7 |
Exploring the positive experience of primary and secondary caregivers of an old person in a resource-limited urban setting in Accra, Gana [14] | 31 family caregivers | phenomenological design | The results demonstrate that caring for older people brought both primary and secondary caregivers tangible and intangible benefits. The intangible benefits include blessings, skill development, better personal qualities, family cohesiveness, and health awareness. The physical benefits included gifts. Positive experiences can lessen caregiver stress and burnout. To improve the good experiences of family carers, policymakers and social workers should develop innovations. When designing these treatments, they should also consider the caregivers' age and gender. |
|
8 |
Primary and Secondary Caregivers of People with Dementia: Differential Patterns and Implications for Psychological Support [15] | 46 caregivers | Qualitative method | For each sort of caregiver, the findings showed various trends. Among primary caregivers, depression and anxiety were associated with the frequency of problem behavior, subjective burden, health, and the comorbidity between anxiety and depression. In contrast, among secondary caregivers, gender (being a woman), subjective burden, health, and the comorbidity between anxiety and |
Table 4. Themes and Sub-Themes: Negative feelings
| Theme 1: Negative Feelings | |
|---|---|
| Caring expectations lead to incompatibility with legal services and a reluctance to leave. | (Stefanny Guerra, 2022) [8] |
| The belief that the family should serve as an older adult's natural support structure could cause the health and social systems of care to disregard the unique requirements of the Latino population. | (Iveris L Martinez, 2022) [9] |
| 1. Caregiver experiences (emotional and psychological), | (Melissa L. Harris, 2022) [10] |
| 2. Dementia patient responses (emotional, psychological, and behavioral), | |
| 3. Dementia patient cognition, | |
| 4. Loss, | |
| 5. Future concerns, | |
| 6. Reliance, | |
| 7. Learning to the caregiver, | |
| 8. Caregiver perspectives, | |
| 9. Caregiver perspectives, | |
| 10. Care strategies. Before and during the epidemic, caregivers described numerous difficulties in providing care | |
| 1. Time limits, | (Sunshine M Rote, 2022) [12] |
| 2. Lack of support | |
| 3. The high expense of proper care. | |
| 4. However, more than half of the carers expressed stress due to these three factors. | |
| 1. Living with dementia and caring for others | (Chejor, 2022) [13] |
| 2. Impediments to dementia care services | |
| 3. Stigma and prejudice; and legal and financial difficulties. | |
| 4. Elderly immigrants with dementia and their families face numerous difficulties due to living with dementia and providing care. | |
| Among primary caregivers, depression and anxiety were associated with the frequency of problem behavior, subjective burden, health, and the comorbidity between anxiety and depression | (Arantxa Gorostiaga, 2022) [15] |
Table 5. Themes and Sub-Themes: Negative feelings.
| Theme 1: Positive Feelings | |
|---|---|
| Rewarding aspects of caregiving | (Melissa L. Harris, 2022) [10] |
| Reasons and motivations for providing care, the role of the extended family, socio-demographic characteristics of caregivers, their responsibilities, and how these intersect, socio-religious attitudes toward providing care for the elderly, social stigma, firsthand experience with dementia, and coping mechanisms are just a few of the topics covered. | (Suzanne H. Hammad, 2022) [11] |
| Over 90% of survey respondents stated that they offer care to assist family members and out of religious conviction, which supported these themes. | (Sunshine M Rote, 2022) [12] |
| 1. Caring for older people brought both primary and secondary caregivers tangible and intangible benefits. 2. The intangible benefits include blessings | FrankKyei-ArthurI, 2022) [14] |
| 3. Skill development | |
| 4. Better personal qualities | |
| 5. Family cohesiveness, and health awareness. | |
| 6. The physical benefits included gifts. | |
| 7. Positive experiences can lessen caregiver stress and burnout. To improve the good experiences of family carers, policymakers and social workers should develop innovations. | |
The emotions that affect families who care for loved ones with dementia share specific common patterns, according to several studies that provided the data for this study. The study's results make two of these themes the actual ramifications of the numerous hidden emotions clear. The results show that the sub-theme of unfavorable feelings in the caregiver's family is far more common than the sub-theme of favorable feelings. Researchers, in particular health professionals, are obligated to emphasize the impact of unpleasant feelings on the family members of the care even when the prior understanding is not a norm. The finest care for adults with dementia can be hindered by negative emotions like sadness, solitude, the risk of self-harm, violence toward people with dementia, and ignorance about the dementia disease process. If you look closely, you will notice that a sub-theme that appears in the researcher's eight publications brings together a variety of negative emotions that caregivers go through. It can be concluded that all dementia caregivers experience sad emotions to some extent. The picture above cannot be used as a standard to verify the reality of the situation because it depicts a family of values that is both too broad and too narrow for researchers to identify themes and sub-themes of the experience of families caring for family members with dementia. Health professionals may better understand the benefits of coaching and supporting families of at-home caregivers as a result of the findings from the sub-themes. Religious and cultural reasons are positive themes. Families hold cultural and religious beliefs in caring for the elderly with dementia. Cultural and religious aspects are the basis and motivation for them to continue caring for their parents with dementia. So that the family can be patient with the changes that occur to their parents who have dementia. In human life, behavior or treatment in the family cannot be separated from the culture adopted by the family. As is known, quoted from the definition of culture put forward by Prof. Koentjaraningrat (one of the Indonesian anthropologists) that culture is the whole system of ideas, actions, and human creations in the context of community life, which is made into the human property by learning. This implies that what humans do is a series of ideas and actions recognized by the community as something that has happened from generation to generation for a long time. Furthermore, in that culture, there is what is called the cultural value system, which is the highest level and the most abstract of customs. However, cultural values serve as guidelines for human life in society. On this basis, what family members do in family life has been outlined in their culture and passed down from generation to generation. Ethnographic descriptions of ethnic groups in Indonesia provide an overview of parents' position in the kinship system and society. The elderly are a respected and valued social group. Attitudes and treatment of parents are expressed symbolically in the marriage ceremony [16]. For the Nias people, old age in the family is considered a time to be an advisor, respected by all members of the family and community and become a person who in the legend of the Nias people is called Todo Hia. His advice is always obeyed because he is considered a person who should be trusted and wise. An older adult has much experience and is a source of stories, legends, and myths. Old age is termed in Nias, Bawa passes, which means the grave's gate. According to them, death was near for them. Therefore the children and their descendants always take good care of them and care. Children will serve good food and excellent and proper clothes and obey their orders, and serve them with respect [16]. In the Javanese ethnicity, the elderly are entitled to high respect. Many live solely by receiving respect because of their excess knowledge of spiritual and practical matters. Nevertheless, respect can be reduced for those who are elderly and senile. The relationship of respect can be seen in the use of high language (krami) when speaking to parents, and in traditional "priyayi" families, people worship first before speaking. The life of the elderly is generally calm. They are beneficial for raising children in the family, and there is usually a warm and comfortable relationship between those older and those younger in the home. In fact, as part of the closeness of grandchildren and grandfather, it is necessary to make or buy pets so that the grandchildren and grandfather together take care of them [16].
The theme that most often appears in this study is negative; this can be used as a basis for researchers and other researchers to realize the importance of mentoring and assistance for families of caregivers of the elderly with dementia at home. It is necessary to develop further research, on how health workers can create models to provide mental strengthening for families who have elderly people with dementia.
Citation: Del Rosa, D.R. and Astuti, R. Experiences of Families Caring for the Elderly with Dementia: Scoping Review .PrimHealth Care.2022, 12(7), 453
Received: 01-Jul-2022, Manuscript No. JPHC-22-68306 ; Editor assigned: 04-Jul-2022, Pre QC No. JPHC-22-68306(PQ) ; Reviewed: 18-Jul-2022, QC No. JPHC-22-68306(Q) ; Revised: 20-Jul-2022, Manuscript No. JPHC-22-68306 (R); Published: 27-Jul-2022, DOI: 10.35248/2376-0389.22.12.07.453
Copyright: ©2022 Dela Rosa, D.R., et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
