Engagement and social interaction in dementia care settings. A call for occupational and social justice

As full citizens, people with dementia are entitled to engage in social and occupational activities in residential care settings. Limitation or deprivation of choice and experience of valued occupations has been described elsewhere as occupational injustice. This research frames the unmet needs of people with dementia for occupation and social interaction, as issues of human rights and citizenship. It identifies a gap in current measurement tools of engagement in residential settings and in response, presents the Assessment Tool for Occupational and Social Engagement (ATOSE) as an objective measure of engagement. It examines results from a study of five residential care settings in Ireland using the ATOSE which included 73 residents with dementia and/or enduring mental health diagnoses. Residents spent on average, 38% of their time engaged and 62% of their time not engaged while in their communal sitting rooms. The ATOSE observations supported the rights of residents as citizens to have low levels of engagement addressed. A critical gerontology lens is employed to discuss concepts of citizenship, occupational justice, and social justice in the context of this research project.     

A sense of home for people with dementia in a long-term care facility: A design perspective

The study aims to provide new insights into the approach to the spatial design of homelike dementia care facilities. This paper builds on Molony's (2010) findings that home meaning in care facilities is a process of people-place integration, and then proposes that people living with dementia can accomplish this process through their bodily habit. This research adopted an ethnographic case study approach. Three cases from a long-term care facility were studied by using semi-structured interviews and observations. According to the findings, having a sense of home for people living with dementia can be understood as a process of re-establishing people-place integration through their bodily habits in a long-term care facility. As a result, designers can consider which design features can assist people living with dementia in re-establishing this integration through bodily habit to create home feelings in a dementia care facility.     

Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

IntroductionCOVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed.ObjectivesTo coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond.MethodsSemi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads.ResultsThe rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking.ConclusionsCombining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations.Patient or Public ContributionWe worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.     

Correcting for non‐compliance in randomized non‐inferiority trials with active and placebo control using structural models

The three‐arm clinical trial design, which includes a test treatment, an active reference, and placebo control, is the gold standard for the assessment of non‐inferiority. In the presence of non‐compliance, one common concern is that an intent‐to‐treat (ITT) analysis (which is the standard approach to non‐inferiority trials), tends to increase the chances of erroneously concluding non‐inferiority, suggesting that the per‐protocol (PP) analysis may be preferable for non‐inferiority trials despite its inherent bias. The objective of this paper was to develop statistical methodology for dealing with non‐compliance in three‐arm non‐inferiority trials for censored, time‐to‐event data. Changes in treatment were here considered the only form of non‐compliance. An approach using a three‐arm rank preserving structural failure time model and G‐estimation analysis is here presented. Using simulations, the impact of non‐compliance on non‐inferiority trials was investigated in detail using ITT, PP analyses, and the present proposed method. Results indicate that the proposed method shows good characteristics, and that neither ITT nor PP analyses can always guarantee the validity of the non‐inferiority conclusion. A Statistical Analysis System program for the implementation of the proposed test procedure is available from the authors upon request. Copyright © 2014 John Wiley & Sons, Ltd.     

Children's adjustment in non‐traditional families in Israel: the effect of parental sexual orientation and the number of parents on children's development

Objectives This study examined differences in children's psychological and social indicators in non‐traditional families in Israel, focusing on fatherless families headed by lesbian mothers and single mothers by choice. Although Israel is considered an industrialized westernized country, centrality of the traditional nuclear family predominates this country. Methods This factorial design study included four family types: lesbian and heterosexual mothers, each in both single and coupled parenthood. Children's measures included the Child Behavior Checklist, perception of peer relations and perceived self‐competence. Results Children from single parent as opposed to two‐parent families exhibited more externalizing behaviour problems and aggressiveness. Children of lesbian mothers reported more prosocial behaviours and less loneliness than children from heterosexual families. No differences emerged for perceived self‐competence across family types. Conclusion Mother's sexual orientation did not affect children's adjustment negatively, whereas single parenthood placed children at greater risk for some difficulties. Implications include the need for apprising health professionals of effects of family types on children's development.     

Patient‐centred care training needs of health care assistants who provide care for people with dementia

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.     

Improving the oral health of older adults with dementia/cognitive impairment living in a residential aged care facility

Background Studies conducted in Residential Aged Care Facilities (RACFs) indicate that high levels of oral diseases and conditions are prevalent in older adults who have dementia. Poor oral health impacts on eating ability, weight, speech, hydration, severity of behavioural problems, appearance and social interactions. This study looked at a group of older adults with dementia in a RACF site in the northern suburbs of Adelaide, South Australia. It is known that in nursing home residents with dementia dental pain and problems are under-detected and under-treated. Strategy An audit was conducted to assess the level of compliance of the RACFs oral hygiene care practices with established best practice. The audit questions were based on current best practice as identified from a rigorous international systematic review of the subject. A clinical audit software program (The Joanna Briggs Institute, Practical Application of Clinical Evidence System (JBI PACES)) was used to manage the audit. An audit, feedback, re-audit cycle was followed. Stakeholders of the project were identified from which a Project team was formed. The Project team analysed the results of the first audit, conducted a situational analysis and formulated and implemented a strategic plan to target specific criteria for a change management process. Short-term and longer-term strategies were identified. Those criteria targeted as achievable in the short term were then re-audited after 6?weeks to determine the effectiveness of the change management process. Findings The criterion Daily cleaning and night-time removal of dentures are documented was re-audited and although there was a slight increase in compliance across the site this increase was not statistically significant. The criterion Resident's dentures are individually marked was re-audited and showed a large increase in compliance across the site, this increase was statistically significant.     

A comparison of the results of intent‐to‐treat,per‐protocol,and g‐estimation in the presence of non‐random treatment changes in a time‐to‐event non‐inferiority trial

While intent‐to‐treat (ITT) analysis is widely accepted for superiority trials, there remains debate about its role in non‐inferiority trials. It has often been said that ITT analysis tends to be anti‐conservative in demonstrating non‐inferiority, suggesting that per‐protocol (PP) analysis may be preferable for non‐inferiority trials, despite the inherent bias of such analyses. We propose using randomization‐based g‐estimation analyses that more effectively preserve the integrity of randomization than do the more widely used PP analyses. Simulation studies were conducted to investigate the impacts of different types of treatment changes on the conservatism or anti‐conservatism of analyses using the ITT, PP, and g‐estimation methods in a time‐to‐event outcome. The ITT results were anti‐conservative for all simulations. Anti‐conservativeness increased with the percentage of treatment change and was more pronounced for outcome‐dependent treatment changes. PP analysis, in which treatment‐switching cases were censored at the time of treatment change, maintained type I error near the nominal level for independent treatment changes, whereas for outcome‐dependent cases, PP analysis was either conservative or anti‐conservative depending on the mechanism underlying the percentage of treatment changes. G‐estimation analysis maintained type I error near the nominal level even for outcome‐dependent treatment changes, although information on unmeasured covariates is not used in the analysis. Thus, randomization‐based g‐estimation analyses should be used to supplement the more conventional ITT and PP analyses, especially for non‐inferiority trials. Copyright © 2010 John Wiley & Sons, Ltd.     

‘She's usually quicker than the calculator’: financial management and decision‐making in couples living with dementia

This article explores how married couples managed their finances and made financial decisions when one spouse had dementia, drawing comparisons with the approaches used prior to the illness. More specifically, the article examines the role of social factors in influencing the involvement of people with dementia in financial management and decision‐making, particularly whether a gender dynamic adopted earlier in a marriage similarly influenced a gendered approach following dementia. The research formed part of a larger study of everyday decision‐making by couples living with dementia which explored the role of non‐cognitive factors in influencing whether people with dementia were involved in decision‐making processes. Twenty‐one married couples living at home took part; the recently‐diagnosed were excluded. Qualitative methods ‐including participant observation and interviews ‐ were used to examine the couples’ fiscal management and decision‐making‐processes, the perceptions of people with dementia and their spouses about their current financial abilities and whether any support provided by spouse‐carers influenced their partners’ financial capacity. The fieldwork was undertaken in the North of England between June 2010 and May 2011. Thematic analysis of the data showed that social factors influenced the perceived capacity of people with dementia and the financial practices adopted by the couples. In particular, gender influenced whether people with dementia were involved in financial decisions. The research demonstrated that non‐cognitive factors need to be taken into account when assessing and facilitating the capacity of people with dementia. In addition, as people with dementia were somewhat marginalised in decisions about designating financial authority (Lasting Power of Attorney), spouse‐carers may need guidance on how to undertake advance care planning and how to support their relatives with dementia in major decision‐making, particularly when there are communication difficulties.     

Perspectives of Australian family carers of people with dementia on the 'cottage' model of respite: Compared to traditional models of residential respite provided in aged care facilities

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi‐structured interviews were conducted with 126 family carers who had used one of two New South Wales‐based respite cottages within a 2‐year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional‐style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.     

Exploring online identity construction for the caregivers of adults living with dementia and the value of interactions with health and social care professionals

Becoming an informal caregiver for an adult living with dementia has been shown to have a significant impact upon the conception of identity. This study aimed to identify how identity is constructed online amongst caregivers of individuals living with dementia and how healthcare interactions can influence identity development through the analysis of online web blogs. Sixteen online blogs (172 entries) were selected through purposive and snowball sampling, and discourse analysis was used to analyse online identity construction for informal caregivers of adults living with dementia. Six areas of online identity construction were identified: changing family role; powerful expert social campaigner; being an advocate; guardian of their relative's selfhood; sustaining creative and spiritual individuality and wider community member in online and real life. Further to this, the importance of health and social care service interactions in the development of caregiver identity revealed that professionals must ensure person-centred service contacts for caregivers. This is a challenging task in the pandemic climate where interactions between health and social care professionals and caregivers are limited due to isolation measures. It is evident that the blog format can provide a forum through which the identity of the caregiver of an adult living with dementia can evolve. The six areas of identity construction reveal the multifaceted nature of identity for the caregiver and the value of belonging to an online community both in relation to identity construction and support. This finding is especially applicable in the current pandemic when accessing a face-to-face community is challenging for caregivers who may be shielding or living in isolation. The findings of this research can aid health and social care professionals in understanding the development of caregiver identity and in providing appropriate support during service interactions, on accessing virtual and face to face community support.