Advance care directive prevalence among older Australians and associations with person-level predictors and quality indicators.

BACKGROUND: Advance care planning (ACP) conversations may result in preferences for medical care being documented. OBJECTIVE: To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person-level predictors and ACD quality indicators. DESIGN AND SETTING: National multi-centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). PARTICIPANTS: A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). MAIN OUTCOME MEASURES: ACP documentation prevalence by setting and type including person-completed ACDs and non-ACD documents (completed by a health professional or someone else); person-level predictors and quality indicators of ACDs. RESULTS: Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. CONCLUSIONS AND CONTRIBUTION: Low ACP documentation prevalence and a lack of accessible, person-completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study.

PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

Identifying barriers and facilitators to implementing advance care planning in prisons: a rapid literature review.

BACKGROUND: Limited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting. RESULTS: Six articles met the selection criteria and reported on the experience of ACP and ACDs in prisons; five from the United States of America and one from Switzerland. Three dominant themes were identified, with related subthemes: system-level factors, attitudes and perceptions, and ACP knowledge and comprehension. Barriers to ACP and ACD implementation were more prominent in articles than facilitators. CONCLUSIONS: Limited academic literature regarding the implementation and experience of ACP in prisons is available. The dominance of barriers identified in studies highlights key challenges for improving ACP uptake in correctional settings. Further research is required to understand the barriers, enablers, and attitudes to ACP in prisons.

Defining sexuality in later life: A systematic review.

OBJECTIVE: To identify whether a consistent definition of sexuality is used across research articles to describe sexuality in later life for heterosexual men and women. METHODS: A systematic review was conducted that examined how researchers define sexuality for heterosexual adults. Peer-reviewed journal articles on sexuality published between 1999 and 2018 were examined for the presence of sexuality definitions. Sexuality themes discussed in each article were recorded, and results were tabulated. RESULTS: Few articles explicitly provide a definition of 'sexuality' as it pertains to later life. Definitions from articles that defined sexuality explicitly were inconsistent across studies. Topics included in implicit and explicit definitions of sexuality were disparate across studies and included a diverse range of sexuality dimensions. CONCLUSION: Greater consistency is needed in how "sexuality" in later life is defined across studies and should be informed by data so that it accurately reflects the sexual experiences of older adults.

Is greenery associated with mental health among residents of aged care facilities? A systematic search and narrative review.

Objectives: Older adults living in residential aged care facilities (RACFs) may be vulnerable to mental health issues. Evidence suggests greenery is beneficial for adults' mental health in community settings. This review aims to summarise evidence of associations between greenery in RACFs and residents' mental health.Method: Six databases were searched with three sets of terms related to: (1) exposure (e.g. garden, green); (2) outcome (e.g. mental health, well-being); and (3) setting (e.g. aged care, nursing home). The inclusion criteria were peer-reviewed journal articles published in English up to 2017, reporting quantitative/qualitative associations between greenery and mental health in RACFs.Results: Of the nine articles identified, seven reported positive associations between greenery (in particular, garden use) at RACFs and some aspect of residents' mental well-being (e.g. quality of life); however, four out of seven studies used observations and perceptions of staff and relatives. One study examined depression and reported reduction in depression following garden use, while one examined physiological indicators of stress (blood pressure, heart rate) and found no association with garden use. Seven studies examined garden use and four examined the presence of greenery (two examined both exposures).Conclusion: Exposure to greenery and use of greenspace in RACFs show promise for promoting mental health. However, the findings relied mainly on non-validated measures of mental health. More robust evidence based on valid and reliable mental health measures is needed. Future studies also need to examine the effect of visual exposure to greenery and the effect of greenery on stress reduction.

Mapping the Perceived Sexuality of Heterosexual Men and Women in Mid- and Later Life: A Mixed-Methods Study.

INTRODUCTION: There is currently limited research that examines the meaning of sexuality at midlife and later life. AIM: This study investigates how heterosexual men and women in mid- and later life perceive their sexuality and the factors that influence it. METHODS: Group concept mapping was used to produce a conceptual map of the experience of sexuality for heterosexual adults ages 45 years and above. Group concept mapping data were collected using 6 open-ended survey questions that asked about sexuality, intimacy, and desire. Thematic analysis was used to examine how participants perceived their sexuality to have changed as they aged. Thematic analysis data were collected using a single open-ended survey question. MAIN OUTCOME MEASURE: Statements generated from 6 of the open-ended survey questions were rated by participants using a 5-point Likert scale for how important participants felt that each statement was to themselves personally. Participants responses to the seventh open-ended survey question were examined using thematic analysis to understand whether participants felt that their sexual experiences had changed over time and, if so, how they had changed. RESULTS: Eight themes were identified across the different phases of group concept mapping. These were, in order of importance, partner compatibility, intimacy and pleasure, determinants of sexual desire, sexual expression, determinants of sexual expression, barriers to intimacy, sexual urges, and barriers to sexual expression. Seven areas of change were identified in terms of perceived changes to sexuality with age. These included changes to perspective, relationship dynamics, environment, behavior, body/function, sexual interest/desire, and sexual enjoyment. CONCLUSION: The results highlight the prioritization of interrelationship dynamics in mid- and later life sexuality over sexual functioning and sexual urges. These findings may facilitate the development of new perspectives on how sexuality is experienced in the later years and provide new avenues for intervention in situations where sexual problems arise. Macleod A, Busija L, McCabe M. Mapping the Perceived Sexuality of Heterosexual Men and Women in Mid- and Later Life: A Mixed-Methods Study. Sex Med 2019; 8:84-99.

How Well Do Measurement Scales Reflect the Actual Experience of Sexuality in Mid-Life and Beyond?

BACKGROUND: There is limited evidence that current sexuality measures accurately reflect the experience of sexuality among older people. AIM: This review investigates whether sexuality scales that examine aspects of sexuality for heterosexual men and women in mid-life and beyond accurately reflect the experiences of these individuals as discussed within qualitative studies. METHODS: Online databases and reference lists were searched for articles from 1997 that investigated experiences of sexuality, aging, and validated sexuality scales. Articles describing scales were included if they reported on a statistically validated measurement scale that was used to measure 1 or more aspects of sexuality for heterosexual adults aged 45 years and above. Qualitative articles were included if they discussed the sexuality experiences of this population. OUTCOMES: 19 Qualitative articles and 11 sexuality scales were located. RESULTS: Aspects of sexuality identified in the qualitative studies were sexual thoughts and fantasies, sexual desire, sexual beliefs, sexual attitudes, sexual values, sexual behaviors and practices, sexual roles, and thoughts and/or feelings about intimacy and relationships. Aspects assessed in the sexuality scales were sexual desire, sexual beliefs, sexual attitudes, sexual behaviors and practices, sexual roles, and thoughts and/or feelings about intimacy and relationships. Gaps between how sexuality at mid-life and later life is experienced and how it is measured in existing scales were found. Existing validated measurement tools fail to provide a nuanced picture of the sexual experiences of adults in mid-life and beyond, which may impact the success of clinical interventions. This article demonstrated the need for more comprehensive sexuality measurement scales. However, it focused exclusively on the experiences of heterosexual adults aged 45 years and above. CONCLUSION: To validly evaluate the sexual expression of older people, new measurement scales are needed that assess multiple aspects of sexuality within a single scale. Macleod A, McCabe MP. How Well Do Measurement Scales Reflect the Actual Experience of Sexuality in Mid-Life and Beyond? Sex Med Rev 2019;7:29-45.

I just can't please them all and stay sane: Adult child caregivers' experiences of family dynamics in care-giving for a parent with dementia in Australia.

Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care-giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers' distress in the context of caring for a parent with dementia. Semi-structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Four themes were identified that represented areas of particular concern and distress for the caregivers: family expectations and caregivers' lack of choice in adopting the care-giving role; denial and differential understandings of dementia among family members; differential beliefs and approaches to care-giving among family members; and communication breakdown between family members. The findings demonstrate several avenues for further research including the development of interventions to support adult child caregivers and address problematic family dynamics within the context of caring for a parent with dementia.

"I just don't focus on my needs." The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study.

BACKGROUND: Family caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers. OBJECTIVE: The aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs. METHOD: Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis. RESULTS: Five themes were identified within the data. The first theme represents caregivers' overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers' health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers' unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves. CONCLUSION: Caregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.

"There isn't an easy way of finding the help that's available." Barriers and facilitators of service use among dementia family caregivers: a qualitative study.

BACKGROUND: Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia. METHOD: Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis. RESULTS: Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers' beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an "expert" point of contact, and having beliefs about the caregiving role that enabled the use of services. CONCLUSION: Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.