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Spirituality and sexuality for living better with dementia in residential settings

Sexuality and spirituality are important topics for people living with dementia in residential settings. This article is not about diversity in diagnosis and service provision, which I cover elsewhere. And there are many aspects of these topics, but this short piece only “scratches the surface”.

I should like to consider sexuality first.

Many professionals working in residential settings report experiencing difficulties, distress and confusion regarding sexual display between patients transferred to such places. Similar uneasiness is also expressed by family members and residents themselves. Sexual behaviours and desires of adults do not cease upon nursing home admission. For example, Hubbard, Tester, and Downs (2003) reported that institutional care residents’ often engage in intimate touch, kissing, sexual talk, flirting, and teasing. There is now a general consensus that sexuality is an intrinsic part of human personal identity. Indeed human sexuality is influenced by multiple factors including culture, ethnicity, religion, education, family and peer group, personal experience and the legal system. Our current law is clear: sexual activity with someone unable to consent is a sexual offence.

For most people living in Western societies, the right to be able to make decisions about one’s life is taken for granted. These decisions include whether or not to engage in sexual behaviour whenever and with whomever one chooses, providing of course it is mutually consensual and within the boundaries of the law. In particular, older people living on their own or with a partner generally continue to enjoy these rights and freedoms, even if they are in the early stages of dementia.

Sexuality is a broad multi-dimensional construct which encompasses relationships, romance, intimacy (ranging from simple touching and hugging, to sexually explicit contact), gender, grooming, dress and styling. However, when an older person moves into a residential aged care facility (RACF), circumstances often change.Ill-health and mobility can affect on the desire and capacity for physical intimacy, but a number of diverse factors in RACF can constrain the ability of persons to express their sexuality and sexual needs, including institutional policies, privacy, and attitudes of the staff. The existent literature strongly indicates that aged care facilities do not tend to be environments that are conducive to, or supportive of, the freedom of sexual expression.

Being able to express our sexuality is known to be important to health, well-being, quality of life and furthermore, human rights. The desire or need to express one’s sexuality does not tend to ‘extinguish’ with age; the general consensus of the studies of older people and sexuality is that there is no known age limit to sexual activity. There might conceivably be a trend of diminishing sexual behaviour with age. For many older people including those living in RACF, sexuality continues to be important. Sex between elderly people has, rather, traditionally been sometimes perceived either not to exist, or to be a topic of humour, or to be morally unseemly. Certainly, therefore, it cannot be assumed that older adults are not sexually active. It further appears that sexual and other intimate contact is healthy amongst older people. The literature overall appears to correlate sexual activity in this population with an enhanced feeling of self-worth, longer life expectancies, better cognitive functioning, and enhanced independence. The absence of such relationships, by comparison, she correlates to loneliness, depression, and even possibly a higher usage of medical and care services. Specifically, all health care team members, including occupational therapists, need to be more sensitive to the sexual desires and needs of older adults.

Abnormal sexual behaviour in the long term care setting includes unwanted sexual advances such as climbing into bed with other residents in a nursing home or actual attempts of intercourse and aberrant sexual behaviour such as sexual aggression. “Inappropriate sexual behaviour” (ISB) has been identified as a significant corollary of the dementias. An extensive review of ISB revealed a multitude of definitions, including ‘sexual advances’, ‘hypersexuality’, and ‘inappropriate commentary’. Its precise aetiology has not been defined; rather, various neurobiological, psychological and environmental explanations have been offered. A difference in function of the prefrontal cortex part of the brain has been implicated, but so has a number of psycho-social factors. However, the legitimate and recognised need for nursing home residents, even those with advanced dementia, to sexually express themselves may make preventing and managing sexual aggression in nursing homes more challenging. It will be a good idea to develop “on-the-job training programmes” for sexual education of residents with dementia in institutions. Regular seminars on sexual care for the residents with dementia might be beneficial for managing sexual issues among residents and to decrease caregivers’ burden.

Spirituality is another interesting area.

It is important to distinguish between spirituality and religion. All people are spiritual regardless of their religious beliefs, although spirituality may be expressed through religious practices and/or a belief in God or a higher being. Religion involves specific practices and beliefs that may be associated with an organised group. Spirituality is a person’s search for or expression of his or her connection to a greater and meaningful context. Being spiritual is part of being human because it forms the root of one’s identity and gives life meaning. The impact of spirituality as a component of psychological wellbeing is becoming more recognised by both health professionals and national organisations. Spirituality is a natural part of human existence and can mean different things to different people. Clinicians are increasingly attempting to provide whole person care, which includes providing spiritual care particularly when administering care at the end of life. “Holistic nursing” addresses the physical, mental, social and spiritual needs in people’s lives. Spirituality may contain dimensions of spiritual well-being (e.g. peace), spiritual cognitive behavioural context (spiritual beliefs, spiritual activities and spiritual relationships) and spiritual coping. Spiritual caregiving may contribute to wellbeing at the end of life, as shown in palliative populations of mostly cancer patients.

In the United States, the United Kingdom, and the Netherlands, about 25% of all deaths occur in the nursing home. In dementia and at the end of life, spiritual caregiving poses particular challenges. For example, it may be difficult to predict the end of life, and to communicate verbally due to cognitive impairment, perhaps with superimposed acute illness. Spiritual caregiving in dementia may be a neglected area, with little research available. For example, in a UK hospital, religious beliefs of dementia patients are less frequently documented than in patients without dementia. Further, recent reviews indicate that there is some evidence of beneficial effects, also in dementia, of spiritual interventions and spirituality and religiousness on, for example, coping, wellbeing, and behaviour. In studies on spiritual care in long term care settings, spiritual support and care are associated with better overall care at the end of life for long term care residents, and that the best target for interventions to improve this type of care is the interaction between residents and facility staff.

Reference

Hubbard, G., Tester, S., & Downs, M. G. (2003). Meaningful social interactions between older people in institutional care settings. Ageing and Society, 23, 99-114.

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