Family Caregivers Of Dementia Patients Research Articles

Educational Needs Assessment for Family Caregivers of Dementia Patients.

People living with dementia are highly dependent on caregivers. We conducted an online survey with regard to caregivers' educational experiences, needs, and expectations. We found that most of the participants lacked educational experiences and expected updated methods through metaverse in virtual reality. Therefore, future studies should verify the effectiveness of education.

From empathy to action: design thinking as a catalyst for community-based participatory research in dementia caregiving

This article delves into the understudied realm of investigating the potential benefits of integrating design thinking into community-based participatory research within the context of culturally diverse dementia caregivers. Following the Double-Diamond process model, we conducted a series of workshops with 15 family caregivers of dementia patients from three distinct communities (multi-racial, Black, and Latino ethnicity) to gain insights into their daily experiences and co-create interventions that could address their pressing challenges. The research question for this study aimed to explore the potential benefits of design thinking in community-based research on dementia caregiving. Our findings contribute to the health design community by demonstrating the potential of design thinking to (1) uncover common and distinct challenges in diverse communities, (2) translate findings into actionable solutions, and (3) design tailored interventions that are responsive to the context-specific needs of the community. Our study leads us to conclude that the integration of design thinking as a catalyst in community-based participatory research has the potential to amplify the identification of nuanced and previously unexamined challenges through empathetic exploration, and to propose innovative interventions that are more amenable to uptake and acceptance within the community.

Investigation of the Effect of an Online Supportive Education Program on the Family Caregivers’ Resilience and Abuse of People with Dementia: A Controlled Randomized Trial

Dementia and its progressive nature necessitate care and impose dependency on family caregivers, exposing them to psychological distress and even abuse of people with dementia. The effects of psychological distress and subsequent abuse can be lessened with increased resilience. This study investigates the effect of a supportive online education program on family caregivers’ resilience and abuse of people with dementia. In total, 74 family caregivers of dementia patients participated in this controlled randomized trial, which was conducted from February 2022 to July 2022. Data were gathered using the Walsh Family Resilience Questionnaire, and the Caregiver Abuse Screen. The collected data were analyzed in SPSS software using descriptive and inferential statistics. There was no significant difference between the two groups in terms of baseline variables, resilience, and abuse. The intervention resulted in no significant difference in the scores of resilience ( p = .08) and abuse ( p = .447). Both the intervention ( p = .430) and control ( p = .082) groups showed no evidence of a significant change in resilience between before and after the intervention. However, a significant difference was found in the abuse scores before and after the study in the intervention group ( p = .022). The intervention did not significantly affect family caregivers’ resilience and abuse of people with dementia, but it reduced abuse in the intervention group. Taking note of these results, this study proposes other solutions to improve outcomes, and also education and support of family caregivers to diminish their abuse of people with dementia.

Time usage analysis according to occupational area and satisfaction level in family caregivers of dementia patients.

This study was designed to investigate the difference between the family caregivers of dementia patients (hereafter referred to as dementia family) and the non-family caregivers of dementia patients (hereafter referred to as non-dementia family) in terms of time usage. A total of 102 dementia families who responded to the 'time use survey' in 2019 were enrolled in the study. 101 non-dementia families include families who did not respond to the 'dementia' item, and simple random sampling was performed. Time usage according to occupational area and satisfaction level were analyzed based on the Occupational Therapy Practice Framework-Fourth Edition (OTPF-4). Statistical analyses were completed using IBM SPSS 25. The data was analyzed by using frequency analysis and independent two-sample t-test. A level of p<0.05 was used as a cut-off for statistical significance. As for the time consumption by occupational area of dementia families and non-dementia families, dementia families spent more time than non-dementia families in instrumental daily life activities. The increase in the time for instrumental activities of daily living, including the time for caring for dementia patients, may lead to changes in time use for members of the family with dementia. By comparing the time usage by occupational area according to gender within the dementia families, it was possible to find out the difference between male and female instrumental daily activities and health care time use. The difference in time use according to gender showed that women took on more caring roles than men, and actually spent more time than men. The amount of time used between the dementia family and the non-dementia family differed according to the group and gender. These results suggest that dementia can cause changes in the time usage of dementia family. Therefore, this study recognizes the need for efficient use of time for dementia families and suggests that there is a need for a balanced use of time according to gender.

How family dementia caregivers perceive benefits of a 4-week Mentalizing Imagery Therapy program: a pilot study.

Family caregivers of dementia patients experience high levels of interpersonal stress that often results in elevated anxiety, and depression, and negative impacts on interpersonal relationships. Changes in behaviors and the structure of relationships with the care recipient (CR) and others in the social milieu challenge the caregivers' ability to mentalize, or understand the links between mental states and behaviors. This study investigates the experiences and perceived benefits of family dementia caregivers who underwent Mentalizing Imagery Therapy (MIT), a treatment aiming to improve balanced self-other mentalizing and reduce psychological symptoms. Purposeful sampling was used to select 11 family dementia caregivers who underwent a 4-week pilot trial of MIT. Semi-structured interviews were completed post-intervention to identify subjective benefits, putative psychological mediators and perceived active components. Caregivers reported improvements in well-being, mood, anxiety, and sleep, and a majority stated MIT helped with forming and maintaining healthier relationships. Some participants noted benefits extending to how they reacted to their social environment and perceived themselves more objectively from others' perspectives. Specific elements of MIT, including self-compassion, self-care, and the ability to reflect on emotionally arousing challenges, might have mediated these improvements. Family dementia caregivers perceived salutary benefits of MIT on multiple domains of well-being. The self reports suggest MIT holds promise for improving well-being, reducing non-mentalizing patterns of thought, and facilitating improvements in balanced mentalization within the caregivers' relationships.

The Relationship between Caregiving Stress and Depression in the Family Caregivers of Dementia Patients: a Parallel Multiple Mediating Effect of Coping Styles and Caregiver Guilt

연구목적: 본 연구의 목적은 치매 환자 돌봄 가족들의 돌봄 스트레스가 우울감에 영향을 미치는 과정에서 돌봄 가족의 돌봄 스트레스, 대처방식, 돌봄 죄책감, 우울감의 관계를 살펴보고, 대처방식과 돌봄 죄책감의 다중병렬 매개효과를 알아보는 것이다. 연구방법: 치매 환자 돌봄 가족 204명이 돌봄 스트레스, 우울감, 대처방식, 돌봄 죄책감에 대한 온라인 설문에 참여했고 이 중에서 중복참여와 미완성 설문지를 제외하고 123명의 자료를 SPSS 프로그램을 사용하여 Hayes (2018) PROCESS macro의 다중병렬 매개모형으로 분석하였다. 연구 결과: 돌봄 스트레스는 우울감에 직접적인 영향을 주었다. 또한 돌봄 스트레스가 높을수록 우울감, 대처방식 중 정서중심 대처와 소망적 사고, 그리고 돌봄 죄책감의 수준이 높아졌다. 대처방식과 돌봄 죄책감의 다중병렬 매개효과를 검증한 결과 돌봄 죄책감만이 매개효과를 나타내었다. 결론: 치매 돌봄 가족의 우울감 예방을 위해서 돌봄 죄책감의 관리가 필요하며 대처방식의 효과를 규명하기 위해서는 추후 연구가 필요하다.

What Types of Burden Experienced by Family Caregivers of Dementia Patients Are Related to Their Life Satisfaction?

As the burdens related to dementia caregiving are vast, this study aimed to examine the relationship between life satisfaction and different types of burden reported by family caregivers of patients with dementia. Data from the 2019 Korea Community Health Survey were used. The association between life satisfaction and caregiving burden reported by family caregivers of patients with dementia was investigated using multivariable regression analysis. These burdens resulted from social prejudice and temporal, physical, psychological, or economic reasons. Life Satisfaction was measured using the Organization for Economic Cooperation and Development Better Life Index. Subgroup analysis was performed based on the residing status of patients with dementia and the region of residence of the caregiver. Data of 12617 participants were analyzed. Compared with individuals with no burden, those who reported a burden due to temporal (β=-0.23, p=.003), psychological (β=-0.18, p < .001), and economic (β=-0.27, p < .001) demands showed poorer levels of life satisfaction. These tendencies were maintained in caregivers residing with patients and those providing care for institutionalized patients. Regarding the region where the caregiver lived, for those living in rural regions, burdens related to social prejudice or economical demands were associated with poor life satisfaction. Family caregivers reporting caregiving-related burdens for temporal, psychological, or economic reasons had lower life satisfaction. These findings suggest the importance of considering caregiver's different needs and conditions when implementing coping strategies when caring for individuals with dementia.

Do Family Caregivers of Dementia Patients Feel Competent in Pain Management?

Older adults with dementia rely on others to recognize and treat their pain and will ultimately become dependent. Family caregivers (FCGs) play a crucial role in pain management, yet limited data is available regarding the factors that impact their abilities. This qualitative descriptive study sought a deep understanding of FCGs perception of their abilities to manage pain for a loved-one with dementia. A sample of 25 adult family caregivers of community-based older adults with dementia was recruited in central Virginia. Participants were 29 to 95 years old, predominantly white, married, female, and high school graduates. We conducted semi-structured interviews that were audio recorded and analyzed using constant comparative analysis. Participants’ who perceived greater competence with pain management reported less pain for their loved-one, and their level of confidence was influenced by 3 factors: progress and stage of dementia: this increases the complexity of care, affecting FCGs ability to manage pain and engendering a self-perception of incompetence; developing adaptive mechanisms: built self-efficacy and improved FCGs perceived competence;, and support from professionals: a greater degree of support alleviated FCGs concerns and instill new skills, Effective pain management depended on family caregivers’ belief in their own abilities, and perceived competence could be improved by learning new skills or making adaptations. Professional care givers need to routinely assess FCGs abilities and provide adequate interventions.

Use of Actigraphy on sleep outcomes for dementia family caregivers: an integrative review

Sleep difficulties are one of the foremost health problems that affect family caregivers of dementia patients increasing their risk for a host of mental health problems and hastening dementia patients’ transitions to long-term care facilities. This integrative review aims to describe the objective measurement of sleep quality parameters of family caregivers using actigraphy and how well they are associated with self-reported subjective measures of sleep outcomes and psychological states. A search was performed using PubMed, CINAHL, and PsycInfo including articles from 2011 to 2020. Twenty studies met the inclusion criteria. Five sleep interventions (2 RCTs and 3 pre-post design) were found, including multi-component interventions (e.g., sleep hygiene, walking, day-time light therapy) that used actigraphy and other self-report measures. Duration of wearing actigraphy (wrist band/watch) varied in studies (3-days to 8-weeks). Most studies reported high accuracy and sensitivity of actigraphy. Sleep parameters measured by actigraphy included ‘total sleep time’, ‘sleep efficiency’, ‘deep/light sleep’, or ‘wake time after sleep onset’. In eight studies, sleep parameters measured by actigraphy were significantly associated with sleep outcomes measured by sleep related self-reported scales (Epworth Sleepiness Scale, Pittsburgh Sleep Quality Index, all Ps<.05). Eleven studies used actigraphy to examine sleep measures associated with various mental health states (depression, burden, stress, positive/negative affect) and found significant relationships (All Ps <.05). Findings support that use of actigraphy for dementia family caregivers is a valid measure of sleep parameters when compared with their sleep self-reports. Furthermore, it was found that actigraphy sleep measures were significantly associated with psychological outcomes.

The Carers\u2019 Needs Assessment for Dementia (CNA-D): a validation study in the Italian population

BackgroundDementia has devastating consequences for families with important physical, psychological, social, and financial effects. Evaluation of caregiver’s needs may be an important step to reduce the burden of family caregivers of dementia patients. An Austrian scale, the Carers’ Needs Assessment for Dementia, is now available for measuring the caregiver’s needs. The aim of our study was to evaluate the psychometric properties of the Italian version of the CNA-D (iCNA-D).MethodsA sample of 214 voluntary caregivers of dementia patients was recruited at the Department of Neuroscience, University of Turin (Italy). All participants were administered the iCNA-D. Validity and reliability of the instrument were evaluated using Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Symptom Checklist-90 (SCL-90), and the Italian version of Zarit Burden Interview (I-ZBI).ResultsThe most common unmet need reported for the iCNA-D was “counseling and emotional support” (31.5%). This item demonstrates adequate reliability with moderate internal consistency for all “summary scores” of iCNA-D (α ≥ 0.75) and split-half correlation of more than 0.80 for two of them. We also found positive correlations in two out of three “summary scores” of iCNA-D and in the overall outcomes of BDI, BAI, SCL-90, and I-ZBI.ConclusionsThe iCNA-D could be a valid and reliable tool for a comprehensive assessment of needs and possible social supports proposed to relatives who take care of patients with dementia. Better understanding of family caregivers’ needs could improve planning of local services and reduce caregivers’ perception of distress and burden.

Ashamed Caregivers: Self-Stigma, Information, and Coping among Dementia Patient Families

The number of people living with dementia increases almost every year, and the majority of the care system for these individuals is often made up of close family members. This study investigates the relationship between family caregivers’ cross-checking of information with healthcare providers and patient health outcomes. Specifically, we examined whether this relationship was mediated by caregivers’ enhanced coping efficacy. We also tested the moderation effect of family caregivers’ affiliate stigma on information cross-checking, coping efficacy, and coping outcomes. Using a survey of 226 family caregivers of dementia patients in South Korea, this study tested the moderated mediation model with the PROCESS macro. Results indicate that low affiliate stigma moderates coping efficacy on the relationship between information cross-checking and dementia patients’ health outcomes. Further implications for family caregiving and general dementia care are discussed.

Cloud-based physiological sound-controlled intelligent music and blood-pressure control system for assisting family caregivers of dementia patients

Population aging causes the prevalence of hypertension to increase, which increases the incidence of dementia and leads to premature death. The simultaneous development of these two diseases accelerates the progression of dementia, leading to a reduction in the patient’s quality of life. This is difficult for caregivers, as it causes them to shoulder a greater burden and brings greater emotional stress, resulting in their wanting to end the care relationship or even neglect or abuse patients. In addition, their own mental and physical health is also severely affected, causing them to seek medical treatment themselves. In view of this problem, we propose a cloud-based physiological sound-controlled intelligent music and blood-pressure control system to assist family caregivers of dementia patients to reduce their burden as well as their stress. We interview family caregivers regarding the benefits of this system in assisting them and find that most caregivers find the system to be helpful.

Caregiver Burden, Quality of Life and Related Factors in Family Caregivers of Dementia Patients in Turkey

This study aimed to evaluate caregiver burden and quality of life (QoL) and their predictors in family caregivers of dementia patients. A descriptive cross-sectional survey was carried out with a sample of 102 patients and their family caregivers. The Caregiver Burden Inventory (CBI) and Short Form-12 (SF-12) were used to collect data. CBI mean score was 37.97 ± 21.30. Mean scores of SF-12 sub-domains varied between 36.02 and 77.94 and were significantly lower as compared to normative means of the general population, excluding only the physical health subdomain. Among several patient and caregiver-related correlations, the number of medications and worse cognitive function of the patient, caregiver’s age and having limited space at home were found as predictors of burden, whereas caregiver’s chronic disease and having a limited space were predictors of QoL. Also, the burden and QoL were correlated. This study demonstrated a high burden and low QoL in dementia caregivers. In societies where caregivers are mostly informal such as that in Turkey, supportive systems should be established.

Exploratory study of regret experienced by family caregivers of dementia patients in surrogate decision-making

Exploratory study of regret experienced by family caregivers of dementia patients in surrogate decision-making

Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients.

Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system. This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts. Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence. Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features. This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.

Perceived Grief Among Caregivers of Patients With Dementia in China.

Chinese family caregivers of dementia patients suffer considerable grief in their caregiving activity; little research has been conducted on dementia caregivers' grief in China. This study aims to (a) confirm the factor structure of the Mandarin version of the Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF), (b) evaluate the levels of family caregivers' grief, and (c) explore the best predictors of family caregivers' grief. A cross-sectional study was conducted to collect data from 91 caregivers of dementia patients. The Mandarin version of the MM-CGI-SF had a three-factor structure. Family caregivers' grief was at an average level. Family caregivers' monthly household income and caring time per day predicted their own grief. The Mandarin version of the MM-CGI-SF possessed the same factor structure as the original English version, and the Chinese family caregivers experienced an average grief which was predicted by the monthly household income and caring time per day of the caregivers.

Depression of persons with dementia and family caregiver burden: Finding positives in caregiving as a moderator.

The present study examined the association between depression of persons with dementia and family caregiver burden, as well as whether the association depended on the level of caregivers' ability to find positives in caregiving. Based on the medical records of a local mental health hospital and the statistics of an epidemiological survey, this cross-sectional study included 157 major family caregivers of non-institutionalized dementia patients in the rural sector of Western China's Sichuan Province. They responded to the Cornell Scale for Depression in Dementia, a short version of the Zarit Burden Interview, a subscale of a caregiver meaning scale and demographic questions. Controlling for the demographic variables of the caregivers, the present study found that dementia patients' depression level was significantly associated with caregiver burden (P < 0.001), and the caregivers' levels of finding positives in caregiving significantly moderated the association (P < 0.05). Furthermore, the positive correlation between dementia patients' depression and caregiver burden was weaker among the family caregivers with a high level of finding positives in caregiving, compared with those with a low level of finding positives in caregiving. This research suggests the importance of facilitating family caregivers of dementia patients to find positives in caregiving. It provides initial data for the development of dementia caregiver burden interventions that are based on the understanding of the deep meaning of dementia caregiving. Geriatr Gerontol Int 2019; 19: 414-418.

Oral care practices for dementia patients and social support and depression in family caregivers of dementia patients

Oral care practices for dementia patients and social support and depression in family caregivers of dementia patients

Predictors of potentially harmful behaviour by family caregivers towards patients treated for behavioural and psychological symptoms of dementia in Japan.

Potentially harmful behaviour (PHB) by caregivers is detrimental to the physical and psychological well-being of care recipients. In Japan, few studies have investigated caregivers' PHB towards dementia patients. This study examined PHB in family caregivers of dementia patients with behavioural and psychological symptoms of dementia (BPSD) and identified factors related to PHB. Following primary consultations at an elderly psychiatric patient department, we enrolled 133 pairs of dementia patients and their family caregivers. We assessed PHB using the Japanese version of the modified Conflict Tactics Scale. We defined the presence of PHB as two or more points (PHB frequency of 'sometimes' or more) on at least one indicator of the modified Conflict Tactics Scale. We investigated the prevalence of PHB in relation to the clinical characteristics of the patients and their family caregivers. We evaluated BPSD using the Neuropsychiatric Inventory and caregiver burden using the eight-item Japanese version of the Zarit Caregiver Burden Interview. Of the family caregivers, 48.9% showed PHB. Multivariate analysis identified the following association with PHB: caregiver's Zarit Caregiver Burden Interview total score (odds ratio [OR], 1.09 per unit increase; 95% confidence interval [95%CI], 1.02-1.16), and Neuropsychiatric Inventory scores for patient irritability (OR, 1.22 per unit increase; 95%CI, 1.06-1.40), appetite/eating disorders (OR, 1.41 per unit increase; 95%CI = 1.08-1.84) and daughters-in-law caregivers (OR, 0.17, 95%CI, 0.05-0.57). Specific BPSD symptoms could contribute to the expression of PHB. In addition to decreasing caregiver burden, more intensive treatment and care strategies are required to manage individual symptoms.

Caregiver Burden in Semantic Dementia with Right- and Left-Sided Predominant Cerebral Atrophy and in Behavioral-Variant Frontotemporal Dementia

Background: Caregiver burden is a serious concern for family caregivers of dementia patients, but its nature is unclear in patients with semantic dementia (SD). This study aimed to clarify caregiver burden for right- (R > L) and left-sided (L > R) predominant SD versus behavioral-variant frontotemporal dementia (bvFTD) patients. Methods: Using the Japanese version of the Zarit Burden Interview (ZBI) and the Neuropsychiatric Inventory, we examined caregiver burden and behavioral and psychological symptoms of dementia (BPSD) in 43 first-visit outpatient/family caregiver dyads (bvFTD, 20 dyads; SD [L > R], 13 dyads; SD [R > L], 10 dyads). Results: We found a significant difference in ZBI score between the 3 diagnostic groups. Post hoc tests revealed a significantly higher ZBI score in the bvFTD than in the SD (L > R) group. The ZBI scores in the SD (L > R) and SD (R > L) groups were not significantly different, although the effect size was large. Caregiver burden was significantly correlated with BPSD scores in all groups and was correlated with activities of daily living and instrumental activities of daily living decline in the bvFTD and SD (R > L) groups. Conclusion: Caregiver burden was highest in the bvFTD group, comparatively high in the SD (R > L) group, and lowest in the SD (L > R) group. Adequate support and intervention for caregivers should be tailored to differences in caregiver burden between these patient groups.