“Behind Closed Doors with open minds?”: A qualitative study exploring nursing home staff’s narratives towards their roles and duties within the context of sexuality in dementia

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Abstract

Background

Despite sexual expression being recognised as a fundamental human need, sexuality in old age is often ignored and frequently misunderstood, with residents with dementia in a nursing home often viewed as asexual or incapable of being sexually active.

Objectives

The current study aims to understand the views held by nursing care home staff towards dementia and sexuality and explore the roles they may adopt whilst responding and managing sexual needs and expression for residents with dementia.

Methods

Face to face, in-depth, semi structured interviews were conducted with eight staff members working in two nursing homes in Greater London, United Kingdom. Data were analysed using Interpretative Phenomenological Analysis.

Results

The findings suggest that representations of sexuality in dementia held by nursing home staff ranged from the perception that sexual expression in old age was part of human nature and a basic human right to others that proposed that with the loss of memory, people with dementia may also experience loss of interest in sexuality and intimacy. Based on the representation of sexuality held (personhood versus biomedical model), nursing home staff adopted a role or a combination of roles (a facilitator, an informant, a distractor, an empathiser, a safeguarder) that legitimised past and anticipated responses in managing sexual expression in the nursing home setting. Nursing home staff’s responses varied depending on the severity of the condition, level of involvement of the resident’s family and their own personal views on their duty of care, old age, sexuality and dementia.

Conclusion

The simplified binary labelling and classification of sexual behaviour in dementia as appropriate or inappropriate often applied in institutional settings, fails to account for complex factors that may influence staff’s decisions on the ethical dilemmas raised by dementia. A role based continuum approach could help staff move away from rigid binary judgments and train them to adopt formal carer roles that promote a more contextualised rights based approach in the provision of dementia care.

Introduction

Sexuality is viewed as a core need and a right throughout the life span of an individual that takes into account their gender roles, identities, sexual orientation, activity, pleasure, eroticism and feelings of intimacy (World Health Organisation, 2006). Although the right to be sexually ‘alive’ is recognised as a fundamental human need, sexuality in old age is often ignored, neglected and frequently misunderstood (Walker, 1997), with older people often viewed as asexual or incapable of being sexually active in society and its institutions (Hajjar and Kamel, 2003). In care home settings, there is variation in how the sexual needs of older people are perceived and managed and often limited discussions about their sexual needs and desires of older people take place (Mahieu and Gastmans, 2015). More recent studies have suggested that nursing staff appeared moderately knowledgeable about aged sexuality and displayed positive attitude toward sexuality in older people (Mahieu et al., 2016).

There are no universally accepted definitions for long-term care facilities. Nursing home provides room and board and 24 h day assistance with activities of daily living, personal and psychosocial care. The availability of services varies from facility to facility and from country to country. Nursing homes mainly serve frail elders with chronic diseases, disabilities, either physical or mental (mainly dementia) or both (Ribbe et al., 1997). Nursing homes are complex bureaucratic, adaptive systems with a number of diverse agents with various cognitive schemas, skill sets and agendas interacting with each other to deliver care (Anderson et al., 2003). In the context of sexuality, participation in decision-making involves the negotiation of different and often, conflicting positions held by manager, family and colleagues (Joseph Rowntree Foundation, 2008).

These decisions are made in a non-discrete manner and in a relational context where the needs of multiple residents, workplace demands, and the general context are considered simultaneously.

In institutional care, when the resident has dementia and sexuality is being considered, there are further taboos at play (Kessel, 2001). The onset of old age, admission to a care home and increasing cognitive dysfunction do not necessarily diminish sexual desires and needs (Higgins et al., 2004). For residents with dementia, the double jeopardy of being old and cognitively impaired compounds the problem further (International Longevity Centre United Kingdom, ILCUK, 2011). While residents may want their sexual desires to be acknowledged (Aizenberg et al., 2002, Casta-Kaufteil, 2004, Lemieux et al., 2004), care home staff often report difficulties when encountering sexual situations for residents with dementia, due to their communication difficulties, declining decision making capacity and staff’s own desire to protect and maintain the resident’s dignity (Ehrenfeld et al., 1997, Tarzia et al., 2012). Resident and staff safety, risk of abuse, aggression and inappropriate sexual behaviours (ISB) are some of the key concerns of care home staff when responding to sexual relationships involving residents with dementia (ILCUK, 2011, Villar et al., 2014). On the other hand, the benefits of sexual expression and intimacy for older people with dementia, such as the enhancement of self-esteem, general health and wellbeing are well documented (Kuhn, 2002).

Some studies suggest the prevalence of inappropriate sexual behaviours (ISB) amongst residents with dementia are relatively low (Alagiakrishnan et al., 2005, ILCUK, 2011, Series and Degano, 2005), but others claim that their prevalence and impact are substantial (Cubit et al., 2007, Lonergan et al., 2002, Scott et al., 2002). ISB is often seen as a part of the symptom cluster of behavioral and psychiatric disturbances associated with dementia, which is often disruptive and distressing for both patient and their carers (Johnson et al., 2006). IBS has been described as a disruptive behavior characterised by a verbal or physical act of an explicit or perceived sexual nature, which is unacceptable or misplaced within the social context in which it is carried out (Johnson et al., 2006). This definition of ISB means that judgments made by care home staff concerning what constitutes appropriate and acceptable in any given time and context may vary and be informed by the culture and policy of the institution and staff’s own attitudes, beliefs and values about dementia and ageing (Higgins et al., 2004, Johnson et al., 2006). For example, in more hospitalised environments and in nursing homes where there is relatively less privacy and a more medicalised/pharmacological approach to dementia care, there may be a different approach to the management of ISB dementia related behaviours (Joller et al., 2013). Lester et al. (2016) found that the rates of policies related to sexual activity in nursing homes were low and the policies and restrictions were not uniform. Guidelines on sexuality in a care home environment have recommended changes in practice to promote a right-based approach to sexuality, privacy and dignity in dementia (Heath, 2011, ILCUK, 2011).

Given the variation in how sexual relationships and dementia related ISB are managed and evaluated in institutional care (Johnson et al., 2009), there is a need to move away from a simplified binary labelling and classification of a sexual behaviour as appropriate or inappropriate and develop a more contextualised and in-depth understanding of care home staff responses to ethical dilemmas of this nature. This study therefore aims to understand the views held by nursing care home staff towards dementia and sexuality. It will explore the challenges and dilemmas they may experience and the roles they may adopt whilst responding and managing sexual needs and expression of/for nursing home residents with dementia.

Section snippets

Design

Face-to-face individual in-depth interviews were selected due to the sensitive nature of the topic.

Participants and recruitment

Nine nursing homes in Greater London providing care for people with and without dementia were invited to participate in the study and only two allowed access to their staff. Nursing homes rather than residential care homes were selected as previous research has highlighted that nursing staff demonstrate more restrictive attitudes towards sexual expression involving residents with dementia (Benbow

Results

Analysis resulted in two main master themes, each with constituent sub-themes: (1) Representation of Sexuality in Dementia and (2) Perceived roles and responsibilities relating to duty of care (see Table 2 below).

Discussion

The aim of this study was to understand the views held by nursing care home staff towards dementia and sexuality and to explore the challenges and dilemmas they may experience whilst responding and managing sexual needs and expression for residents with dementia. The findings make an important contribution to the nursing evidence base on working with people with dementia. The findings highlight the importance of moving away from describing, labelling and classifying sexual behaviours as

Conflict of interest

None declared.

Funding

None.

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