Factors associated with subjective burden among informal caregivers of home-dwelling people with dementia: a cross-sectional study.

BACKGROUND: It is estimated that more than 57 million people have dementia worldwide, and it is one of the leading causes of care dependency in old age. Relatives and other informal caregivers are the most important support for individuals with dementia, but caring for a loved one with dementia may burden the caregiver. Caregiver burden may have adverse outcomes for both the informal caregiver and the care recipient, including decreased quality of life. Caregiver burden is associated with several factors concerning the informal caregiver, the care recipient, and relational and other contextual factors. The aim of this study was to explore which factors are associated with informal caregivers' subjective burden when caring for individuals living at home with dementia. METHODS: This study was a cross-sectional survey among informal caregivers of home-dwelling individuals with dementia in all five geographical regions of Norway. There were 540 informal caregivers who participated, 415 of whom were included in the regression analyses. Caregivers' subjective burden was assessed with the Relatives' Stress Scale. Covariates included were classified into four levels: individual (twofold: informal caregiver and person with dementia), relational, community, and time. Linear multivariable regression analyses were used to identify associations between subjective burden and included factors. RESULTS: Several covariates were statistically significantly associated with subjective burden at the four levels. These covariates included self-rated health, mental distress, age, coping through resignation and denial, emotional and instrumental support, substance use, and humor at the informal caregiver level; behavioral and psychological symptoms of dementia, dementia severity, and degree of disability at the care recipient level; the extent of care, being the primary caregiver, and previous relationship satisfaction at the relational context level; and informal caregivers spending time with friends, leisure activities, social restriction, and knowledge of available health services at the community context level. CONCLUSIONS: Informal caregivers' mental distress and care recipients' neuropsychiatric symptoms were the factors with the strongest association with subjective burden.

Contextual Factors Associated with Abuse of Home-Dwelling Persons with Dementia: A Cross-Sectional Exploratory Study of Informal Caregivers.

One in six community-dwelling older adults experience elder abuse yearly, and persons with dementia are especially at risk. Although many risk factors for elder abuse have been identified, there are still knowledge gaps concerning risk and protective factors. This cross-sectional survey among Norwegian informal caregivers (ICGs) aimed to find individual, relational, and community factors associated with psychological and physical abuse of home-dwelling persons with dementia. This study involved 540 ICGs and was conducted from May to December 2021. Statistical analysis using penalized logistic regression with lasso was performed to find covariates associated with psychological and physical elder abuse. The most prominent risk factor for both subtypes of abuse was the caregiver being a spouse. In addition, risk factors for psychological abuse were having a higher caregiver burden, experiencing psychological aggression from the person with dementia, and the person with dementia being followed up by their general practitioner. For physical abuse, the protective factors were the ICG being female and having an assigned personal municipal health service contact, while the risk factors were the ICG attending a caregiver training program and experiencing physical aggression from the person with dementia and the person with dementia having a higher degree of disability. These findings add to the existing knowledge of risk and protective factors in elder abuse among home-dwelling persons with dementia. This study provides relevant knowledge for healthcare personnel working with persons with dementia and their caregivers and for the development of interventions to prevent elder abuse.

Abusive episodes among home-dwelling persons with dementia and their informal caregivers: a cross-sectional Norwegian study.

BACKGROUND: Elder abuse is a serious issue with a global prevalence of 15.7% in the community setting. Persons with dementia are at higher risk of elder abuse than the older population in general. With a high and increasing prevalence of dementia this issue cannot be neglected. Hence, the aims of this study were 1) to describe the proportion of abusive episodes among home-dwelling persons with dementia and their informal caregivers, and 2) to explore differences between informal caregivers who have reported committing and not committing abusive acts. METHODS: A cross-sectional survey was conducted among informal caregivers of home-dwelling persons with dementia in Norway from May to December 2021 with a total of 549 participants. RESULTS: Two-thirds of informal caregivers had committed at least one abusive episode toward the person with dementia in the past year (63.5% psychological abuse, 9.4% physical abuse, 3.9% financial abuse, 2.4% sexual abuse, 6.5% neglect). One-third of informal caregivers had experienced aggression from the person with dementia (33.9% psychological abuse, 7.8% physical abuse, 1.1% financial abuse, 1.4% sexual abuse). Tests for independence showed that the risk of abusive episodes from informal caregivers toward persons with dementia was higher when the informal caregiver was a spouse/partner of the person with dementia and if they experienced aggression from the person with dementia. CONCLUSIONS: The results demonstrate that a majority of informal caregivers commit some form of abusive episodes, and episodes that fall within the scope of psychological abuse are most frequent. This study expands knowledge about elder abuse among home-dwelling persons with dementia. Increased understanding of the dynamics of abuse is essential to be able to reduce risk and prevent abuse.

Improving everyday life of people with dementia living at home: Health care professionals' experiences.

AIM: This study investigates what health care professionals experience is important for improving everyday life of people with dementia living at home. BACKGROUND: A prerequisite for living at home is that people with dementia and their relatives can handle everyday life together despite the challenges that dementia poses. METHODS: This qualitative study conducted focus group interviews (n = 14), and the data were analysed using qualitative content analysis. RESULTS: The analysis identified one theme-need for enhanced competence to develop and implement individual plans-and three categories: challenge in identifying cognitive decline; need to timeously facilitate an active and meaningful everyday life; and need for consistency, continuity and coordination in dementia home care. CONCLUSION: Increased expertise is needed among health care professionals to contribute to the development and implementation of individual plans in dementia home care. To achieve this, health care professionals' competence and how dementia home care is organized must be seen in conjunction. IMPLICATIONS FOR NURSING MANAGEMENT: Routines should be established for identifying cognitive failure early and providing support and guidance at the beginning of the process. There is a need for nurse managers to facilitate increased advanced competence regarding dementia care for a professional home care service and to consider how home services can be organized to ensure continuity and security for people with dementia and their relatives. Creating and implementing an individual plan which can be a starting point for identifying individual needs and wishes and for coordinating an individual user's services.

Coping with Everyday Life for Home-Dwelling Persons with Dementia: A Qualitative Study.

AIM: This study aimed to gain insight into factors that influence everyday coping strategies as described by persons with early to intermediate dementia. BACKGROUND: Living with dementia presents difficulties coping with everyday life. This study focuses on coping with everyday life for persons with mild to moderate dementia in order to facilitate their ability to live at home. DESIGN: A qualitative study. METHODS: Individual interviews with 12 persons with dementia were conducted in their own homes. FINDINGS: Coping with everyday life can be influenced by the experience of the diagnostic process and by information about dementia. It can also be affected by stigmatization of persons with dementia, as well as by challenges in everyday life. In addition, challenges in receiving help may include poor continuity of services and healthcare staff with limited competence. By contrast, person-centered care led to positive experiences that supported everyday coping skills. Most of the respondents wanted to participate in day care several days a week. Other positive experiences were making new friends and participating in meaningful activities; such experiences could enhance to coping strategies. CONCLUSION: To strengthen everyday coping for persons with dementia living at home, there is a need for openness about the disease. Follow-up for persons with dementia must be carried out by reputable professionals trained and educated in dementia care. Finally, the municipalities must have contact persons, dementia coordinator/-team, who are available for persons with dementia at the time of diagnosis position and afterwards.

Informal caregivers and persons with dementia's everyday life coping.

This qualitative study explores informal caregivers' experiences of supporting persons with dementia's everyday life coping. In the future, there will be fewer health personnel, increased dementia prevalence and limited nursing home availability. Accordingly, close relatives may be compelled to assume greater care responsibilities. Knowledge concerning persons with dementia's everyday coping from the perspective of informal caregivers remains insufficient, despite these people's importance for those with dementia. This investigation analyses informal caregivers' perceived challenges and pleasures in providing care, how home health care affects everyday life coping and the factors that are most important to informal caregivers in supporting care receivers.

A literature review of survey instruments used to measure staff-to-resident elder abuse in residential care settings.

Aim: To review the literature of existing survey instruments used to measure the occurrence of staff-to-resident elder abuse in residential care settings. Methods: A comprehensive literature search during May 2017 produced 2,037 records. Two authors independently reviewed these records for inclusion, where a total of 17 studies met eligibility criteria. Descriptive information of all identified survey instruments is provided. Results: This literature review reveals a diversity of survey instruments used to measure staff-to-resident abuse in residential care settings. The survey instruments varied greatly, where most instruments were self-developed by the authors and provided none or limited information on psychometric properties. Most studies were conducted in high-income countries and many of them in the United States.

How Volunteers Contribute to Persons with Dementia Coping in Everyday Life.

INTRODUCTION: The society needs volunteers to fulfill its duty to ensure that people with dementia have active and meaningful everyday lives. Volunteers seem to experience their work as positive and meaningful for their own part, but we know less about what motivates volunteers to start working in home-dwelling dementia care and what motivates them to continue their engagement. This study seeks to close some of the knowledge gaps that exist regarding volunteers' engagement in activities for persons with dementia. AIM: The aim of this study was to explore what motivates volunteers to start engaging in volunteer work in home-dwelling dementia care and what motivates them to continue their engagement. METHODS: The study design was qualitative, using focus group interviews. Three focus group interviews (n=16) took place between May and June 2018. The text was analyzed using content analysis. RESULTS: Findings in this study indicate that the volunteers were motivated by the feeling of doing an important job for the persons with dementia and their relatives, and that they contribute to their coping with everyday life. Other motivating factors included feeling important to someone, gaining friendship, and sharing common interests. They also believed that they do an important job for the community to fulfill society's goal that people with dementia should stay home longer. However, the volunteers were confused about their role and ask for knowledge, peer support, and clarification of roles. CONCLUSION: To maintain motivation volunteers need to know what his/her role is. A volunteer can and shall not act as a substitute for a professional, only as a supplement, and the expectations must be addressed to all stakeholders: the health care service, the volunteer, the person with dementia, and their relatives, as we believe that this will contribute to diminishing misunderstandings.