Who's Involved? Case Reports on Older Adults' Alcohol and Tobacco Use in Dutch Residential Care Facilities.

Residential care facilities (RCFs) provide 24/7 care to older adults with cognitive and/or physical disabilities and aim to provide person-centered care (PCC). Maintaining residents' autonomy is important to provide PCC, for example, with shared decision-making (SDM). Residents are largely dependent on multiple stakeholders, which could jeopardize their autonomy, especially regarding unhealthy behaviors, such as smoking tobacco or drinking alcohol. This case study explores the dynamics of multiple stakeholders around four RCF residents regarding their alcohol and/or tobacco use. Four RCF residents who smoke tobacco and/or drink alcohol were selected from a previous study, and their (in)formal caregivers were additionally invited to participate. A qualitative research design was chosen, and semi-structured interviews were conducted. The Ethics Review Board from the Tilburg University School of Social and Behavioral Sciences (Reference: RP39) and the executive boards of the two participating organizations granted approval. Narrative portraiture resulted in four case descriptions. Two cases focused mostly on tobacco use, and two cases focused mostly on alcohol use. Multiple stakeholders were involved on different levels: family bought alcohol or cigarettes, and team managers supported care professionals. However, little interaction was found between stakeholders. In these cases, limited interaction between the stakeholders, including the resident, jeopardizes SDM and, in this way, PCC regarding residents' alcohol and/or tobacco use. SDM on this topic could enhance interaction between all stakeholders involved, which could increase PCC. Finally, the cases indicate a constant struggle between protecting residents from adverse outcomes of alcohol and tobacco use and enhancing their autonomy.

Care Staff's Sense-making of Intimate and Sexual Expressions of People with Dementia in Dutch Nursing Homes.

OBJECTIVES: The Person-centered Care (PCC) philosophy emphasizes close care relationships to enable care professionals to recognize the needs of nursing home residents with dementia. This study explored how care professionals make sense of resident behavior with regard to intimacy and sexuality. METHODS: 26 nursing home care professionals (15 Nurses, 9 Health Care Professionals and 2 Managers) completed in-depth interviews that were subjected to an Interpretative Phenomenological Analysis (IPA). RESULTS: Three thematic layers were identified. 1. Care Professionals pursue a "true" understanding of intimate and sexual behavior that underpins a resident's expression. 2. When care professionals feel the need to protect themselves, they can reframe a specific care relation in order to continue care. 3. The social context around the resident, from family to professionals (i.e. peers), influences interpretation of behavior and, consequently, the provision of care. CONCLUSIONS: Intimate and sexual expressions of residents can put care relations under pressure. Care relations that lack professional distance may compromise care professionals' judgments, impede their natural boundaries and decrease their well-being. CLINICAL IMPLICATIONS: Along with implementing PCC principles, organizations should empower staff to develop, discuss and include self-reflection skills and personal boundaries within their work.

Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective.

Objectives: Residential care facility (RCF) residents with dementia are highly dependent on care. This can influence their experience of intimacy and sexuality. The perspective of residents and their spouses with regard to love, intimacy, and sexuality were explored and analyzed.Methods: The study was designed using the IPA methodology. Eight in-depth interviews were held with 12 participants: four couples and four individual residents with dementia.Results: Varied stories were shared; however, dementia had a great impact on all of them. Love, intimacy, and being together were considered fundamentally important by both couples and individual participants, although profound dilemmas were encountered. While only one couple experienced physical sexuality within the RCF, other participants reported that love and being intimate were the most important aspects of their current relationship. Regarding the possibility of fulfilling their needs within the RCF, a secure feeling of privacy was considered to be important, but was absent at the time of the survey.Conclusions: Although challenging to appropriately facilitate at RCFs, love, intimacy, and sexuality are still important aspects for residents with dementia and their spouses.Clinical implications: This study addresses these dilemmas and ads to the normalization of love, intimacy, and sexuality within RCF settings; the findings will hopefully improve the wellbeing of residents with dementia and that of their spouses.

The influence of organizational factors on the attitudes of residential care staff toward the sexuality of residents with dementia.

BACKGROUND: The attitudes of care staff toward the sexuality of residents with dementia they care for is assumed to influence the residents' expression of their sexuality in the way they want. This paper examines the effect of organizational factors, person-centered care, and the culture of the organization on the attitudes of care staff toward the sexuality of residents with dementia in residential care facilities (RCF) . METHODS: Care staff in different functions at six RCF organizations (N = 187) participated. Using a survey, we gathered information on demographics and care-staff careers, attitudes toward resident sexuality, the culture of the organization, person-centered care, and knowledge of resident sexuality. Ordinary least square (OLS) hierarchical analyses were performed to analyze results. RESULTS: Care staff attitudes were found to be positively affected by person-centered care, and marginally positively affected by a supportive culture in the organization, Moreover, knowledge of resident sexuality positively affected care staff 'attitudes toward resident sexuality, and the presence of policy regarding resident sexuality affected them negatively . CONCLUSIONS: Despite different study limitations, these results give a first insight in a broad perspective on care staff attitudes toward resident sexuality. In addition to improving knowledge of the care staff, enhancing person-centered care and a supportive culture in the organization will improve care-staff attitudes toward resident sexuality.

Intimacy and sexuality of nursing home residents with dementia: a systematic review.

BACKGROUND: Considering people with dementia, increasing cognitive, physical, and environmental impairments can impede the capacity to express and experience intimacy and sexuality. When a move to a residential (nursing) home becomes inevitable, increasing dependency can influence this even more. The aim of the review is to provide a structured overview of all elements of intimacy across the full spectrum of intimacy and sexuality in people with dementia, living in specialist residential care. METHODS: A systematic search and review were conducted. Research published between 1990 and 2013 was identified in the electronic databases: Pubmed, PsychInfo, and Medline. Inclusion and exclusion criteria were predefined. Selected studies were assessed on quality, using the Mixed METHODS Appraisal Tool. RESULTS: Twelve of the 215 initially retrieved unique research publications were selected. A varied range of studies were found; these studies differed in design, research quality, searched population, and research theme. Different themes emerged: intimate and sexual behavior, knowledge and attitudes, capacity to consent and care culture, and staff training and guidelines. CONCLUSIONS: Although results were found in a wide range of intimate and sexual behavior, knowledge, attitudes and needs of others, and descriptions of culture in residential and nursing homes, the perspective of residents was lacking in literature. Also a "protective" care paradigm was found throughout. Future research is needed to highlight resident perspective and develop training opportunities and guidelines for care staff.

Live and let live: Residents' perspectives on alcohol and tobacco (mis)use in residential care facilities.

BACKGROUND: Alcohol and tobacco use could cause health problems in older adults. Older adults who become in need of 24/7 care due to physical and/or neurological disabilities may need to move to a Residential Care Facility (RCF). RCFs aim to provide person-centred care (PCC) to enhance quality of life (QoL) of residents. OBJECTIVES: This study aims to explore perspectives of residents on alcohol and tobacco use, which is essential to provide PCC. METHODS: A qualitative research design was chosen, and semi-structured interviews were conducted. Residents who use alcohol and/or tobacco and those who do not use these substances were purposively selected in two organisations on two types of units: psychogeriatric units and units providing care for residents with mainly physical disabilities. The results were analysed using thematic analysis. RESULTS: Thematic analysis resulted in five themes: Current use and self-reflection, knowledge and attitudes, addiction or habit, policies and availability, dependency versus autonomy. CONCLUSION: Residents in this study value their autonomy regarding alcohol and tobacco use. They experience dependency on their (in)formal caregivers to use these substances and acknowledge that their use could cause a nuisance to others, challenging the ability of caregivers to implement PCC. Future research could assess how to integrate providing PCC to residents by offering choices and autonomy, while considering the addictive component of these substances, health and safety risks for all. IMPLICATIONS FOR PRACTICE: This study could help care professionals to become aware of the habits and wishes of residents regarding alcohol and tobacco use and to discuss the possibilities and limitations within RCFs.

Love, Intimacy and Sexuality in Residential Dementia Care: A Spousal Perspective.

The experiences and needs of spouses of residential care facility residents with dementia, regarding friendship, love, intimacy, and sexuality were explored. Understanding of how spouses make sense of their experiences was pursued. Semi-structured interviews were held with nine spouses of people with dementia, living in high intensive 24-hour care units within residential care facilities. The results show that friendship, love, intimacy, and sexuality were still embedded in the couples' marital lives, but all in their own way. Changing roles and a shift in purpose of the relationship recurred. Although intimacy was found to be still important in the lives of spouses, emotional, and practical residential care facility barriers were experienced by the spouses, of which the absence of communication were most important. Our findings on the experiences of spouses with regard to intimacy and sexuality can help residential care facility staff and policymakers to recognize the needs of couples and take these into account.

A person-centered approach to study intimacy and sexuality in residential care facility (RCF) clients with dementia: Methodological considerations and a guide to study design.

BACKGROUND: The person-centered perspective of residential care facility (RCF) residents with dementia with regard to their intimate and sexual lives is largely neglected in research. OBJECTIVE: We aim to provide methodological considerations and reflections on a performed qualitative study. Recommendations and a guide to study design are provided to inform and encourage future research on the inclusion of people with dementia as participants. METHODS: Methodological recommendations and reflections are described in chronological order of the procedure. Fragments of interviews are included for further illustration and clarification. RESULTS: Considering preparation, close involvement of clinical practice, and extensive deliberation regarding study design tended to be important. Considering procedure, investment in contacts with clinical practice and authorized representatives; an introduction meeting; person-centered inclusion and consent; profound skills in interviewing participants with dementia; and flexibility in data collection were proven of importance. Considering data analysis and study quality, including field notes and aiming at a balance between study quality and practicability to enhance study 'rigor' were found important. CONCLUSION: Including the person-centered perspective in research on intimacy and sexuality of RCF residents with dementia, is challenging and takes a flexible and creative approach. It is, however, worthwhile to close the gap in literature.