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.

Perceived Stress in Older Dementia Caregivers: Mediation by Loneliness and Depression

Coupled with aging, chronic stress experienced by dementia caregivers often leads to deteriorating health. Comparing caregivers and non-caregivers, we tested whether depression and loneliness mediate the relationship between caregiver status and a measure of chronic stress, the Perceived Stress Scale. Seventy-six cognitively normal older adults (mean age 72.7) were identified as caregivers or non-caregivers based on the functional independence of a paired family member. Caregivers reported more perceived stress, depression, and loneliness than non-caregivers. Using multiple mediation analyses, we found that loneliness and depression mediated the relationship of caregiver status with perceived stress. The loneliness effect on perceived stress was both direct and via its relationship with depressive symptoms. The findings suggest loneliness as a likely point of intervention to reduce caregiver stress. Initiatives to enable caregivers to maintain or develop social relationships apart from caregiver responsibilities may mitigate stress and its negative impact on mental and physical health.

“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers’ Knowledge, Burden, and Quality of Life

This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention’s effectiveness, repeat measure ANOVA and Mann–Whitney, Friedman, and Dunn’s tests were performed. At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Our findings show that this program had a positive effect on the caregivers’ knowledge and quality of life. However, the program did not affect the caregivers’ burden.

Rural Versus Non-Rural Residence and Psychosocial Outcomes Among Caregivers of Patients with Dementia and Related Disorders

We used data on 718 dementia caregivers and multivariable linear regression to test associations between residential locale and psychosocial outcomes (grief, wellbeing, burden, quality of life [QOL], self-efficacy/mastery, and social networks). Rural residence (versus urban or suburban) was not associated with the psychosocial outcomes. However, for rural caregivers, greater self-efficacy/mastery was associated with lower grief (versus urban/suburban) and burden (versus suburban), and greater social network quality was associated with lower burden (versus suburban) and higher QOL (versus urban). Interventions targeting self-efficacy/mastery and social networks may be particularly effective at improving rural caregivers’ mental health and QOL.

Going Into a Community, We Need to Start From Where They’re At: Caregiver and Advocate Perspectives

We recorded and inductively coded an open-ended discussion of jargon surrounding “dementia” with the “Supporting Dementia Caregivers After Death” community advisory board (CAB). CAB-members included current and former caregivers of PLWD due to early- and normal-onset Alzheimer’s, Lewy body, and Parkinson’s, a co-president of the Alzheimer’s Association (ALZ) Young Champions, a dementia trainer/consultant and member of a Catholic church that preserves American Indian spiritual traditions, a senior program manager at ALZ who was entrusted by American Indian reservation elders to provide dementia education, a care partner support group leader, and an Alzheimer’s Ambassador chosen by multiple US senators. Themes identified included differential inclusiveness of terms like “memory loss” versus “dementia”, misuse and misunderstanding of “dementia” versus “Alzheimer’s,” and the difficulty of translating “dementia” into the American Indian Ojibwe (i.e., Anishinaabemowin) language where suggested translations directly translated to “slow memory loss”, “brain deterioration”, “absent mindedness”, or even “craziness”.