Planning and designing a self-compassion intervention for family carers of people living with dementia: a person-based and co-design approach.

BACKGROUND: This article describes the research activities undertaken to plan and design a self-compassion intervention for family carers of people living with dementia using a person-based and co-design approach. In providing this example, our aim is two-fold: to highlight the value of using qualitative research and co-design processes within intervention development; and to showcase systematic reporting of an intervention's early planning and design stages. METHODS: A person-based and co-design approach informed the planning and design of the self-compassion intervention. In Stage 1, qualitative interviews were undertaken with 14 family carers of people living with dementia and 14 professional stakeholders. In Stage 2, intervention guiding principles were developed, psychological theory was incorporated, and six family carers of people living with dementia were engaged as co-designers. RESULTS: Knowledge generated during intervention planning identified that the intervention should be situated within the concept of compassion more broadly; address misperceptions, fears, blocks, and resistances to self-compassion; and target feelings of shame, guilt, and self-criticism. Subsequent intervention design activities determined that the needs of family carers of people living with dementia were best met by tailoring an existing intervention, namely group-based Compassion-Focused Therapy. CONCLUSIONS: Our systematic approach highlights the value of incorporating in-depth qualitative research and co-design within the intervention development process to prioritise the perspectives and lived experiences of family carers of people living with dementia. The planning and design process outlined provides insight that is applicable to the development of our intervention and complex health interventions within gerontology and beyond.

Experiences of compassion among family carers of older adults: Qualitative content analysis of survey free-text comments.

OBJECTIVES: To provide qualitative insight into the experiences of compassion (to self, to others and from others) among family carers of older adults by exploring the written responses provided within a cross-sectional survey that asked about carers' levels of compassion, mindfulness, emotion regulation, coping strategies and psychological health. METHODS: Family carers of adults aged ≥65 years from around the world completed the survey between July and December 2019. To provide carers with an opportunity to describe experiences in their own words and expand on issues beyond the limits of closed-response items, the survey included eight free-text boxes. These appeared after each self-report measure and at the end of the survey. From a total of 127 carers providing 504 written responses, inductive qualitative content analysis identified and evaluated 245 comments from 105 family carers' that were about their experiences of compassion (to self, to others and from others). RESULTS: Some family carers perceived a lack of compassion, both for themselves and from others, and several barriers to carers' openness to receiving compassion were identified. Factors influencing carers' compassion to others in general included how carers were feeling themselves, the person it was directed towards and the situation. Within the caregiving relationship specifically, this included care recipients' level of need and behaviour. CONCLUSIONS: Findings provide qualitative understanding about family carers' realities of compassion (to self, to others and from others) within their role and highlight the applicability and warranted focus of compassion-based approaches within family caregiving research and practice.

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study.

The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system's response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.

Validity of the Compassionate Engagement and Action Scales with family carers of older adults: confirmatory factor analyses.

OBJECTIVES: 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. DESIGN: A series of confirmatory factor analyses were undertaken to test the previously proposed factor solutions of each scale. SETTING: As part of a larger cross-sectional survey, the scales were completed online or via hard copy between July and December 2019. PARTICIPANTS: An international sample of 171 family carers of adults aged 65 years or older. MEASUREMENTS: 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: 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. CONCLUSIONS: 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.

'For me at 90, it's going to be difficult': feasibility of using iPad video-conferencing with older adults in long-term aged care.

Objectives: To explore the feasibility of using the video-conferencing program, Skype, on iPads with older adults living in long-term care (LTC) facilities.Method: Using a mixed-method design, six residents from one LTC facility in Queensland, Australia participated in a one-off interactive intervention session, followed by post-session semi-structured interviews. The intervention session involved a 15-minutes training session in using Skype, and 30-minutes interactive practise in making and receiving a call using Skype. Residents were interviewed after the intervention session to explore their experience and perceptions of using Skype on the iPad. Reflections about the intervention session were written as study notes by the research team. Qualitative data were analysed using an inductive, thematic analytic approach.Results: Four broad themes emerged: (1) Video-conferencing on iPads is inhibited by age-related cognitive decline and physical frailty; (2) Video-conferencing is an unfamiliar technology for many older residents, and practice and staff assistance are required; (3) Video-conferencing is regarded positively, and seen as a good way of communicating with family/friends; and (4) Use of video-conferencing highlights general concerns held about privacy and cyber security issues.Conclusion: Without adequate staff assistance, video-conferencing via iPads may be challenging for an older population in LTC. Alternatives such as telepresence robots may assist with these challenges.

Effects of non-facilitated meaningful activities for people with dementia in long-term care facilities: A systematic review.

This systematic review sought to evaluate the effectiveness of non-facilitated meaningful activities for older people with dementia in long-term care facilities. Searches were conducted in PubMed; CINAHL; EMBASE; Web of science; PsycINFO; Cochrane; ProQuest; and ClinicalTrials.gov to identify articles published between January 2004 and October 2019. A total of six studies were included. Results implied that current randomised controlled trials or controlled trials about non-facilitated meaningful activities for people with living dementia in long-term care facilitates are limited, but those included in this review were of adequate methodological quality. Meaningful non-facilitated activities, such as music, stimulated family presence, animal-like social robot PARO/plush toy and lifelike dolls, may have beneficial effects on agitation, emotional well-being, feelings of pleasure, engagement, and sleep quality. However, there remains a lack of conclusive and robust evidence to support these psychological and physiological effects of non-facilitated meaningful activities for older people with dementia living in long-term care facilities by care staff.

Self-Compassion, Health Outcomes, and Family Carers of Older Adults: An Integrative Review.

OBJECTIVES: This review sought to synthesize published evidence about the role of self-compassion on health outcomes for family carers of older adults, to describe the current state of knowledge. METHOD: Using an integrative review method that permitted any research design, eight databases were searched. Extensive searching of gray literature sources was also undertaken. Studies included in the review underwent processes of methodological quality assessment (Mixed Methods Appraisal Tool - Version 2011), data extraction, analysis, and syntheses. RESULTS: Four studies were included: two randomized controlled trials, a descriptive cross-sectional survey, and a qualitative study. There was preliminary evidence to show the potential of self-compassion to help family carers cope and reduce levels of burden. However, efficacy of self-compassion interventions to improve family carer health outcomes could not be determined. CONCLUSIONS: Self-compassion in family carers of older adults is a new and emerging research area, and there is very little published evidence about how self-compassion might be developed to improve health outcomes for family carers. CLINICAL IMPLICATIONS: To inform clinical understanding within this population, future quality research is needed, particularly regarding proof-of-concept, moderating effects of carer and care recipient factors, reliability of self-compassion measures, and the development and testing of self-compassion based interventions.

The Role of Self-Compassion, Dispositional Mindfulness, and Emotion Regulation in the Psychological Health of Family Carers of Older Adults.

Objectives: This study explored the role of compassion and dispositional mindfulness in the psychological health of family carers of older adults and tested for potential mediating effects of emotion regulation difficulties and adaptive coping strategies.Methods: A sample of 141 family carers of adults aged 65 years or older with chronic conditions completed a cross-sectional survey between July - December 2019. The survey included self-report scales that measured: self-compassion, compassion for others, compassion from others, dispositional mindfulness, depression, anxiety, stress, emotion- and problem-focused coping strategies, and difficulties in emotion regulation.Results: Path analyses found that increased self-compassion and increased dispositional mindfulness was associated with lower psychological distress, and that this was mediated by reduced difficulties in emotion regulation. The model had excellent fit, explaining 64.8% of the variance in psychological distress, and 52.2% of the variance in emotion regulation difficulties.Conclusions: Self-compassion and dispositional mindfulness may help buffer the psychological distress of family carers of older adults, and adaptive emotion regulation is an important mechanism of change in these relationships.Clinical Implications: Interventions that aim to cultivate self-compassion and mindfulness could be clinically useful in reducing psychological distress within populations of family carers of older adults by promoting adaptive emotion regulation.

Can lifelike baby dolls reduce symptoms of anxiety, agitation, or aggression for people with dementia in long-term care? Findings from a pilot randomised controlled trial.

Objectives: To compare a lifelike baby doll intervention for reducing anxiety, agitation, and aggression in older people with dementia in long-term care (LTC), with usual facility care; and explore the perceptions of care staff about doll therapy. Method: Pilot, mixed-methods, parallel, randomised controlled trial, with follow-up semi-structured interviews. Thirty-five residents from five LTC facilities in Queensland, Australia were randomised to the lifelike baby doll intervention (three, 30-minute, individual, non-facilitated sessions per week) or usual care. Outcomes were changes in levels of anxiety, agitation, and aggression after the 3-week intervention, and short-term effects at week 1. Following intention-to-treat principles, repeated measure MANOVA was undertaken. Qualitative interviews involved five staff. Results: The doll intervention did not significantly reduce residents' anxiety, agitation, or aggression when compared to usual care at weeks 3 (primary outcome) and 1 (secondary outcome). However, there was a significant group-by-time interaction for the outcome of pleasure - the doll group showed a greater increase in displays of pleasure at week 3 compared to baseline than usual care (F(1,31) = 4.400, p = 0.044; Cohen's d = 0.74). Staff perceived benefits for residents included emotional comfort, a calming effect, and providing a purposeful activity. Perceived limitations were that doll therapy may only be suitable for some individuals, some of the time, and the potential for residents to care for the doll at the expense of their health. Conclusions: Doll therapy can provide some residents with enjoyment and purposeful engagement. Further research should focus on understanding the individual characteristics and circumstances in which residents most benefit.

Using a therapeutic companion robot for dementia symptoms in long-term care: reflections from a cluster-RCT.

OBJECTIVES: We undertook a cluster-randomised controlled trial exploring the effect of a therapeutic companion robot (PARO) compared to a look-alike plush toy and usual care on dementia symptoms of long-term care residents. Complementing the reported quantitative outcomes , this paper provides critical reflection and commentary on individual participant responses to PARO, observed through video recordings , with a view to informing clinical practice and research. METHOD: A descriptive, qualitative design with five participants selected from the PARO intervention arm of the trial. The trial is registered with the Australian New Zealand Clinical Trials Registry (ACTRN12614000508673). RESULTS: The five participants and their responses to PARO are presented in terms of three issues: i.) Different pre-intervention clinical presentations and different responses; ii.) Same individual, different response - the need for continual assessment and review; and iii.) The ethics of giving and retrieving PARO. Implications for clinical practice and future research are discussed in relation to each issue. CONCLUSION: The findings suggest that one approach does not fit all, and that there is considerable variation in responses to PARO. A number of recommendations are discussed to aid the delivery of psychosocial interventions with PARO in practice, as well as to guide future research.

Care staff perceptions of a social robot called Paro and a look-alike Plush Toy: a descriptive qualitative approach.

OBJECTIVES: Social robots such as Paro, a therapeutic companion robot, have recently been introduced into dementia care as a means to reduce behavioural and psychological symptoms of dementia. The purpose of this study was to explore care staff perceptions of Paro and a look-alike non-robotic animal, including benefits and limitations in dementia care. METHODS: The study assumed a descriptive qualitative approach, nested within a large cluster-randomised controlled trial. We interviewed a subsample of 20 facility care staff, from nine long-term care facilities in Southeast Queensland, Australia. Thematic analysis of the data, which was inductive and data-driven, was undertaken with the assistance of the qualitative software, ATLAS.ti®. RESULTS: The findings refer to four categories: increasing excitement for Paro and decreasing enthusiasm for Plush Toy; value and function of Paro; opportunities for engagement; and alternatives vs. robustness. CONCLUSION: Staff caring for people with dementia preferred Paro compared to a look-alike Plush Toy. Staff identified that Paro had the potential to improve quality of life for people with dementia, whereas the Plush Toy had limitations when compared to Paro. However, participants expressed concern that the cost of Paro could reduce opportunities for use within aged care.

Long-term cognitive impairment and delirium in intensive care: A prospective cohort study.

BACKGROUND: Whilst there is a growing body of research exploring the effect of delirium in intensive care unit (ICU) patients, the relationship between patient delirium and long-term cognitive impairment has not been investigated in settings where low rates of delirium have been reported. OBJECTIVES: To assess the association between the incidence of delirium, duration of mechanical ventilation and long term cognitive impairment in general ICU patients. METHODS: Prospective cohort study conducted in a tertiary level ICU in Queensland, Australia. Adult medical and surgical ICU patients receiving ≥12h mechanical ventilation were assessed for delirium on at least one day. Cognitive impairment was assessed at three and/or six-months using the: Repeatable Battery for the Assessment of Neuropsychological Status (RBANS); Trail Making Test (TMT) Part A and B; and Mini-Mental State Examination (MMSE). RESULTS: Of 148 enrollees, 91 (61%) completed assessment at three and/or six months. Incidence of delirium was 19%, with 41% cognitively impaired at three months and 24% remaining impaired at six months. Delirium was associated with impaired cognition at six-months: mean TMT Part A scores (information processing speed) were 7.86s longer than those with no delirium (p=0.03), and mean TMT Part B scores (executive functioning) 24.0s longer (p=0.04). CONCLUSIONS: ICU delirium was positively associated with impaired information processing speed and executive functioning at six-months post-discharge for this cohort. Testing for cognitive impairment with RBANS and TMT should be considered due to its greater sensitivity in comparison to the MMSE.

Evaluating the capabilities model of dementia care: a non-randomized controlled trial exploring resident quality of life and care staff attitudes and experiences.

BACKGROUND: 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. METHODS: 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). RESULTS: 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). CONCLUSIONS: 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.

Patient, family-centred care interventions within the adult ICU setting: An integrative review.

OBJECTIVES: Patient, Family-Centred Care (PFCC) is internationally advocated as a way to improve patient care. The aim of this integrative review was to extend the knowledge and understanding by synthesising empirical evidence of PFCC interventions within the adult intensive care unit (ICU) setting. REVIEW METHOD USED: An integrative review methodological framework was employed, permitting the inclusion of all research designs. A comprehensive and systematic search, selection, quality appraisal, and data extraction of research were conducted to synthesise knowledge and identify research gaps. DATA SOURCES: A systematic search of the following databases was conducted: MEDLINE; CINHAL; PsycINFO; Cochrane Library; Web of Science-Current Contents Connect; Web of Science-Core Collection; The Joanna Briggs Institute EBP Database; ProQuest Sociological Abstracts; and ProQuest Dissertation and Theses Global. Primary research in adult ICUs was included. REVIEW METHODS: Data extracted from the studies included authors, year, country of origin, design, setting, sample, intervention, data collection strategies, main findings and limitations. Study quality was assessed using the Mixed Methods Appraisal Tool. RESULTS: Forty-two articles met the inclusion criteria and were included in the review. Only a third of the papers stated the theory underpinning their study. Three themes emerged with interventions predominantly around Interacting with the target sample; Culture and Connection and Service Delivery interventions were also identified. Few studies integrated more than one dimension of PFCC. CONCLUSIONS: Research into PFCC interventions is diverse; however, few researchers present a multi-dimensional approach incorporating a culture shift to enact PFCC throughout the ICU trajectory. There is an opportunity for future research to describe, develop, and test instruments that measure PFCC based on its multiple dimensions and not on one component in isolation. Importantly, for PFCC to successfully individualise quality patient care, a commitment and enactment of partnerships between health care professionals, patients, and family members is imperative.

The effect of massage on agitated behaviours in older people with dementia: a literature review.

AIMS AND OBJECTIVES: To review the literature on massage used to manage agitated behaviours in older people with dementia, assess its efficacy as a non-pharmacological approach and provide recommendations for future research. BACKGROUND: Agitation has traditionally been managed with chemical or physical restraint. There has been a growing interest in complementary therapies such as massage. DESIGN: A literature review. METHODS: Cooper's five-stage model of synthesising research guided the review process. The search terms 'massage', 'agitation' and 'dementia' were defined, and 10 databases were searched in October 2011. No date limitations were applied, although searches were limited to articles written in English. For relevant records, full-text copies were obtained and assessed in terms of inclusion criteria and methodological quality using the Validity Rating Tool (VRT). Data were extracted using a form constructed with reference to the checklist of items to consider in data extraction, produced by the Cochrane Handbook for Systematic Reviews of Interventions. RESULTS: Thirteen studies met the inclusion criteria and were assessed on the VRT. One study was considered of adequate methodological quality to be included in the review. This prospective study found that massage significantly reduced levels of agitation in 52 cognitively impaired residents in two long-term care facilities. CONCLUSIONS: There is a severe paucity of research that considers the effects of massage on managing agitated behaviours in older people with dementia. Whilst conclusions cannot be drawn from the one study included in this review, it did provide evidence to support the use of massage as a non-pharmacological approach to managing agitation in older people with dementia. More research, of better methodological quality, is needed. RELEVANCE TO CLINICAL PRACTICE: There is a need for health practitioners to be aware of the limited evidence for massage as an intervention for agitation and to provide opportunities to validate massage practice.

The effect of foot massage on long-term care staff working with older people with dementia: a pilot, parallel group, randomized controlled trial.

BACKGROUND: Caring for a person with dementia can be physically and emotionally demanding, with many long-term care facility staff experiencing increased levels of stress and burnout. Massage has been shown to be one way in which nurses' stress can be reduced. However, no research has been conducted to explore its effectiveness for care staff working with older people with dementia in long-term care facilities. METHODS: This was a pilot, parallel group, randomized controlled trial aimed at exploring feasibility for a larger randomized controlled trial. Nineteen staff, providing direct care to residents with dementia and regularly working ≥ two day-shifts a week, from one long-term care facility in Queensland (Australia), were randomized into either a foot massage intervention (n=9) or a silent resting control (n=10). Each respective session lasted for 10-min, and participants could receive up to three sessions a week, during their allocated shift, over four-weeks. At pre- and post-intervention, participants were assessed on self-report outcome measures that rated mood state and experiences of working with people with dementia. Immediately before and after each intervention/control session, participants had their blood pressure and anxiety measured. An Intention To Treat framework was applied to the analyses. Individual qualitative interviews were also undertaken to explore participants' perceptions of the intervention. RESULTS: The results indicate the feasibility of undertaking such a study in terms of: recruitment; the intervention; timing of intervention; and completion rates. A change in the intervention indicated the importance of a quiet, restful environment when undertaking a relaxation intervention. For the psychological measures, although there were trends indicating improvement in mood there was no significant difference between groups when comparing their pre- and post- scores. There were significant differences between groups for diastolic blood pressure (p= 0.04, partial η2=0.22) and anxiety (p= 0.02, partial η2=0.31), with the foot massage group experiencing greatest decreases immediately after the session. The qualitative interviews suggest the foot massage was well tolerated and although taking staff away from their work resulted in some participants feeling guilty about taking time out, a 10-min foot massage was feasible during a working shift. CONCLUSIONS: This pilot trial provides data to support the feasibility of the study in terms of recruitment and consent, the intervention and completion rates. Although the outcome data should be treated with caution, the pilot demonstrated the foot massage intervention showed trends in improved mood, reduced anxiety and lower blood pressure in long-term care staff working with older people with dementia. A larger study is needed to build on these promising, but preliminary, findings. TRIAL REGISTRATION: ACTRN: ACTRN12612000659808.

Technology in aged care: a qualitative survey of academic, research, and technology industry professionals.

AIMS AND OBJECTIVES: The study's aim was two-fold: (1) to explore the experiences and perceptions of industry, academic, and research professionals concerning technologies used within aged care; and (2) to identify needs-led priorities for the future development and application of technologies within aged care. BACKGROUND: Global population ageing requires a recalibration of aged care policies, systems, and services to promote and support healthy ageing. It is expected that technology will play an important role in this regard. This study qualitatively assessed the landscape of technology use in aged care from the perspective of industry, academic, and research professionals. DESIGN: A purposefully designed cross-sectional survey collecting experiences, perspectives, and barriers about technology through open responses. METHODS: Using convenience sampling, thirty-five participants completed an online survey between April and October 2020. A descriptive qualitative content analysis approach was used to analyse the written responses. Reporting of findings followed the EQUATOR's Standards for Reporting Qualitative Research checklist. RESULTS: Four themes were identified that characterised the use of technologies within aged care: (1) User Perceptions and Attitudes: wariness and reluctance to technology; (2) Systemic Issues within Aged Care: Under-resourced with opportunities for innovation; (3) Technology-Related Barriers: Equity, costs, privacy, integration, and interoperability and (4) Research Priorities: Co-design and integration of technology. CONCLUSIONS: The existing technology does not meet the needs of older people, aged care personnel and the system in general, which prevents its successful implementation and uptake.

Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts.

AIMS: This article reports on a study of quality of life of older people with dementia, as assessed by the person with dementia, family carer and care staff. BACKGROUND: People with dementia can give meaningful assessments of their quality of life, but these often differ from proxy ratings. In understanding this discrepancy, the influence of age, extent of cognitive impairment and activity limitation has been investigated. A lack of conclusive associations between quality of life ratings and these variables indicates a need for further research. METHODS: Fifty-eight triads comprising the person with dementia, family carer and member of care staff from four long-term care facilities were surveyed on the quality of life-Alzheimer's Disease questionnaire between August and December 2007. RESULTS: There was an important difference in the quality of life-Alzheimer's disease questionnaire total mean scores between groups, with the person with dementia providing the highest ratings. Level of impairment in activities of daily living had an important effect on quality of life ratings, with proxies, particularly care staff, providing lower ratings when there was greater activity limitation. This was not replicated for assessments made by the person with dementia. Age or level of cognitive impairment did not influence any ratings. CONCLUSION: People with dementia can give assessments of their quality of life. However, discrepancy in ratings, with greater activity limitation affecting proxy ratings but not those made by the person with dementia, indicates the importance of including both self-report and proxy measures in research and care planning.