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To confirm the factor validity of the Compassionate Engagement and Action Scales (CEAS), as set out in the original development study, when used with a sample of family carers of older adults.
A series of confirmatory factor analyses were undertaken to test the previously proposed factor solutions of each scale.
As part of a larger cross-sectional survey, the scales were completed online or via hard copy between July and December 2019.
An international sample of 171 family carers of adults aged 65 years or older.
The CEAS are three measures that individually assess Compassion for Self, Compassion to Others, and Compassion from Others. All scales measure two aspects, “engagement” and “actions” (two-factor solution), and Compassion for Self also measures two further dimensions within engagement: “sensitivity to suffering” and “engagement with suffering” (three-factor solution).
Results were largely consistent with the two-factor solutions proposed for the three orientations of compassion, with acceptable fit and good internal reliability. There was some support for the three-factor solution of Compassion for Self; however, despite model fit comparable to the two-factor solution, internal reliability of the delineated “engagement” dimensions was low, and there was a weak factor loading for item 5 that measured distress tolerance.
Use of the CEAS with family carers of older adults is promising. Further research is recommended with larger samples and to explore distress tolerance as a competency within conceptualization and measurement of compassion.
To investigate the effect of a social robot intervention on depression, loneliness, and quality of life of older adults in long-term care (LTC) and to explore participants’ experiences and perceptions after the intervention.
A mixed-methods approach consisting of a single group, before and after quasi-experimental design, and individual interview.
Twenty older adults with depression from four LTC facilities in Taiwan were recruited.
Each participant participated in 8 weeks of observation and 8 weeks of intervention. In the observation stage, participants received usual care or activities without any research intervention. In the intervention stage, each participant was given a Paro (Personal Assistive RobOt) to keep for 24 hours, 7 days a week.
The Geriatric Depression Scale, the UCLA Loneliness Scale Version 3, and the World Health Organization Quality of Life Questionnaire for older adults were administered at four time points. Individual qualitative interviews with thematic analysis followed.
A repeated multivariate analysis of variance and Friedmanʼs test showed no significant changes during the observation stage between T1 and T2 for depression and quality of life (p >.5). For the intervention stage, statistically significant changes in decreasing depression and loneliness and improving quality of life over time were identified. Three themes emerged from the interviews: (i) humanizing Paro through referring to personal experiences and engagement; (ii) increased social interaction with other people; and (iii) companionship resulting in improved mental well-being.
There were significant improvements in mental well-being in using Paro. Further research may help us to understand the advantages of using a Paro intervention as depression therapy.
There is limited research on the use of telerehabilitation platforms in service delivery for people with acquired brain injury (ABI), especially technologies that support delivery of services into the home. This qualitative study aimed to explore the perspectives of rehabilitation coordinators, individuals with ABI, and family caregivers on the usability and acceptability of videoconferencing (VC) in community-based rehabilitation. Participants’ experiences and perceptions of telerehabilitation and their impressions of a particular VC system were investigated.
Guided by a theory on technology acceptance, semi-structured interviews were conducted with 30 participants from a community-based ABI service, including 13 multidisciplinary rehabilitation coordinators, 9 individuals with ABI, and 8 family caregivers. During the interview, they were shown a paper prototype of a telehealth portal for VC that was available for use. Interview transcripts were coded by two researchers and analysed thematically.
The VC was used on average for 2% of client consultations. Four major themes depicted factors influencing the uptake of VC platforms; namely, the context or impetus for use, perceived benefits, potential problems and parameters around use, and balancing the service and user needs. Participants identified beneficial uses of VC in service delivery and strategies for promoting a positive user experience.
Perceptions of the usability of VC to provide services in the home were largely positive; however, consideration of use on a case-by-case basis and a trial implementation was recommended to enhance successful uptake into service delivery.
Adherence to treatment is a primary determinant of treatment success. Caregiver support can influence medication adherence in people with cognitive impairment. This study sought to characterize medication adherence in older people with dementia from the caregivers’ perspective, and to identify influencing factors.
Caregivers caring for a person with dementia and living in the community were eligible to complete the survey. Bayesian profile regression was applied to identify determinants of medication adherence measured using the Adherence to Refills and Medication Scale.
Out of the 320 caregivers who participated in the survey, Bayesian profile regression on 221 participants identified two groups: Profile 1 (55 caregivers) with a mean adherence rate of 0.69 (80% Credible Interval (CrI): 0.61–0.77), and Profile 2 (166 caregivers) with a mean adherence rate of 0.80 (80% CrI: 0.77–0.84). Caregivers in Profile 1 were characterized with below data average scores for the following: cognitive functioning, commitment or intention, self-efficacy, and health knowledge, which were all above the data average in Profile 2, except for health knowledge. Caregivers in Profile 1 had a greater proportion of care recipients taking more than five medications and with late-stage dementia. Trade, technical, or vocational training was more common among the caregivers in Profile 1. Profile 2 caregivers had a better patient–provider relationship and less medical problems.
Bayesian profile regression was useful in understanding caregiver factors that influence medication adherence. Tailored interventions to the determinants of medication adherence can guide the development of evidence-based interventions.
To explore the experiences and challenges for residential care home staff when managing the healthcare needs of their residents, in particular those living with dementia.
Increasing number of older people, with complex health and social care needs are living in residential care homes. Yet there is limited appreciation of why staff sometimes struggle to manage residents’ healthcare needs, or understanding of their working relationship with district nurses (DNs), whose responsibility it is to provide nursing support.
This PhD study, in a metropolitan area in the United Kingdom, was conducted by an experienced DN and involved three phases. This paper focuses on the first two phases. Phase 1 data included: semi-structured interviews (n=8), reflective field notes based on non-participant observation, documentary analysis of policies, procedures and assessment tools and other contextual data from one care home (case study site). The practitioner researcher reflected on the findings from the case study, in relation to her own knowledge and experience as a DN, focusing in particular on findings that were familiar, or which surprised. In Phase 2 she fed these findings back to other care homes (n=11) to check whether the findings from the single case study were unique or resonated with others. She gathered their feedback through semi-structured interviews with senior care staff (n=14). Data were analysed using thematic data analysis.
Findings highlight the complexity facing residential care homes: high levels of healthcare needs amongst residents, the demands of caring for residents living with dementia, variations in the knowledge and skill set of care staff, inequity in the level of healthcare support, the challenges of building a good relationship with DNs, and funding pressures facing care homes.
Any, or all of these factors can prevent care home staff from managing the healthcare needs of their residents.
Behavioral and psychological symptoms of dementia (BPSD) are a common problem in long-term care facilities (LTC). Clinical guidelines dictate that first-line treatments for BPSD are psychosocial and behavioral interventions; if these are unsuccessful, psychotropic medications may be trialed at low doses and their effects can be monitored.
There have previously been no studies with nationally representative samples to investigate psychotropic administration in LTCs in Australia. This study determines the prevalence of psychotropic administration in a representative stratified random sample of 446 residents living with dementia from 53 Australian LTCs. Questionnaire and medical chart data in this study is drawn from a larger cross-sectional, mixed methods study on quality of life in Australian LTCs.
It was found that 257 (58%) residents were prescribed psychotropic medications including: antipsychotics (n = 160, 36%), benzodiazepines (n = 136, 31%), antidepressants (n = 117, 26%), and anti-dementia medications (n = 9, 2%). BPSD were found to be very common in the sample, with 82% (n = 364) of participants experiencing at least one BPSD. The most prevalent BPSD were depression (n = 286, 70%) and agitation (n = 299, 67%).
Although detailed background information was not collected on individual cases, the prevalence found is indicative of systematic industry-wide, over-prescription of psychotropic medications as a first-line treatment for BPSD. This study highlights a clear need for further research and interventions in this area.
Socially assistive robots are increasingly used as a therapeutic tool for people with dementia, as a means to improve quality of life through social connection. This paper presents a mixed-method integrative review of telepresence robots used to improve social connection of people with dementia by enabling real-time communication with their carers.
A systematic search of Medline, ProQuest, PubMed, Scopus, Web of Science, CINAHL, EMBASE, and the Cochrane library was conducted to gather available evidence on the use of telepresence robots, specifically videoconferencing, to improve social connectedness, in people with dementia. A narrative synthesis was used to analyze the included studies.
A review of 1,035 records, identified four eligible peer-reviewed publications, reporting findings about three different mobile telepresence robots. The study designs included qualitative and mixed-methods approaches, focusing primarily on examining the feasibility and acceptability of the telepresence robots within the context of dementia care. These studies reported both positive outcomes of using telepresence robots to connect people with dementia to others, as well as barriers, such as a lack of experience in using a robot and technological issues.
Although limited, the current literature suggests that telepresence robots have potential utility for improving social connectedness of people with dementia and their carers. However, more systematic feasibility studies are needed to inform the development of telepresence robots followed by clinical trials to establish efficacy within dementia care.
This 12 month, Australian study sought to compare the Capabilities Model of Dementia Care (CMDC) with usual long-term care (LTC), in terms of (1) the effectiveness of the CMDC in assisting care staff to improve Quality Of Life (QOL) for older people with dementia; and (2) whether implementation of the CMDC improved staff attitudes towards, and experiences of working and caring for the person with dementia.
A single blind, non-randomized controlled trial design, involving CMDC intervention group (three facilities) and a comparison usual LTC practice control group (one facility), was conducted from August 2010 to September 2011. Eighty-one staff members and 48 family members of a person with dementia were recruited from these four LTC facilities. At baseline, 6 and 12 months, staff completed a modified Staff Experiences of Working with Demented Residents questionnaire (SEWDR), and families completed the Quality of Life – Alzheimer's Disease questionnaire (QOL-AD).
LTC staff in the usual care group reported significantly lower SEWDR scores (i.e. less work satisfaction) than those in the CMDC intervention group at 12 months (p = 0.005). Similarly, family members in the comparison group reported significantly lower levels of perceived QOL for their relative with dementia (QOL-AD scores) than their counterparts in the CMDC intervention group at 12 months (p = 0.012).
Although the study has a number of limitations the CMDC appears to be an effective model of dementia care – more so than usual LTC practice. The CMDC requires further evaluation with participants from a diverse range of LTC facilities and stages of cognitive impairment.
Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL.
The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations.
This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.
One of life’s truisms is that we will all experience ageing. Most of us won’t think about it until the effects of ageing give us either a gentle nudge or a hard wake-up call. Either way, when we are confronted with its effects, quite reasonably we won’t want it to define us. Rather the effects and changes of ageing will be woven into the fabric of what makes us unique as individuals.
Unfortunately in the western world the term ‘ageing’ has evolved to have negative connotations in a way that devalues the worth of the individual’s contributions – past, present and future. Yet we know that the older person can be resilient, informed about their health issues and actively engaged in the decisions about their health and care requirements. As a health professional, adopting a strengths-based perspective means we can support the person and their family, acknowledging their strengths and resources rather than focusing on problems, vulnerabilities and potential deficits.