Unit 3: Residential care facilities and dementia

The intrinsic need and desire to express oneself sexually does not end at a particular age, nor does it necessarily end once a person has reached a stage of their life when they may need to enter into an assisted living or residential care facility or where they may suffer from an age-related cognitive impairment such as dementia or Alzheimer’s disease (Bach et al. 2013; Gott & Hinchliff 2003; Kontula & Haavio-Mannila 2009; Laumann et al. 2004; Lindau et al. 2007; Moreira et al. 2005). Although research in this area is still emerging, the existing literature suggests that facilitating the sexual expression of older adults in residential care has many health benefits, both physical and psychological, and can contribute to their overall well-being. For example, one study conducted in the United States amongst residents of a retirement community found that sexually active residents were more likely to be taking fewer medications, had a more active social life, where more physically active and reported higher levels of life-satisfaction and quality of life generally than residents who were sexually inactive. Indeed, sexually inactive residents were more likely to have bladder and bowel issues, mental ill-health concerns and higher risk levels for diabetes, hypertension, cardiovascular disease and dementia (Bach et al. 2013).

  Introduction

The intrinsic need and desire to express oneself sexually does not end at a particular age, nor does it necessarily end once a person has reached a stage of their life when they may need to enter into an assisted living or residential care facility or where they may suffer from an age-related cognitive impairment such as dementia or Alzheimer’s disease (Bach et al. 2013; Gott & Hinchliff 2003; Kontula & Haavio-Mannila 2009; Laumann et al. 2004; Lindau et al. 2007; Moreira et al. 2005). Although research in this area is still emerging, the existing literature suggests that facilitating the sexual expression of older adults in residential care has many health benefits, both physical and psychological, and can contribute to their overall well-being. For example, one study conducted in the United States amongst residents of a retirement community found that sexually active residents were more likely to be taking fewer medications, had a more active social life, where more physically active and reported higher levels of life-satisfaction and quality of life generally than residents who were sexually inactive. Indeed, sexually inactive residents were more likely to have bladder and bowel issues, mental ill-health concerns and higher risk levels for diabetes, hypertension, cardiovascular disease and dementia (Bach et al. 2013).

Research on best practice suggests that in so far as is possible, the rights of an older person who is resident of a care facility, to self-determination and autonomy of self-expression should be respected and that those rights should extend to freedom of sexual expression (Elias & Ryan 2011; Rheaume & Mitty 2008; Tarzia et al. 2012). Nonetheless, challenges arise for health and social care practitioners with regard to how to facilitate a resident’s right to express themselves sexually, particularly when the older person may be living with dementia or other forms of cognitive impairment. Health and social care practitioners must therefore weigh up complex issues of autonomy and the right to freedom of expression against issues of capacity to consent, and possibly the feelings of family members who may be uncomfortable with or reject the idea of their older loved one engaging in sexual activity.

  Key message

  • Older people in residential facilities are likely to confront extra barriers to engaging in a healthy sex life
  • Older people with cognitive conditions who are living in residential facilities are particularly likely to confront barriers
  • Older people with cognitive conditions can raise complex issues for health and social care practitioners, especially in areas such as consent and autonomy

  Learning outcomes

  1. Be aware of the barriers to engaging in a healthy sex life applicable to residential facilities
  2. Have knowledge of the manner in which cognitive conditions may impact sexual expression
  3. Be aware of strategies that can assist health and social care practitioners in care facilities to empower older people

   Content

While many older people confront barriers in the area of sexuality and intimacy, older people living in residential facilities can confront particular challenges. Common barriers can include:

  • attitudes and perceptions of staff, often due to a lack of adequate training
  • concerns over family disapproval or objection
  • religious, cultural and societal values in relation to aging, disability and sexuality
  • attitudes and social values of other residents
  • structural factors including lack of privacy or double beds
  • restrictive practices, lack of policy and a conservative organisational ethos

One of the main barriers identified is the attitudes and perceptions of care facility staff, often related to a lack of training or familiarity with the area. In such circumstances, displays of sexuality can be viewed by staff as reflecting problematic or challenging behaviour rather than as expressions of a need for intimacy, love and affection. Staff attitudes to sexuality are often informed by wider societal views on aging, infirmity and sexuality, and perpetrate the common myths in this area. Because of the widespread perception of older people as “asexual”, many staff may feel that sexual relationships are inappropriate. This can be compounded by a lack of training generally, as well as a lack of policy in care facilities on how to address and facilitate the sexual expression of residents. Where residents may have cognitive conditions, the situation is even more complex and common concerns of care facility staff may include concerns that a relationship may be coercive rather than mutual and, a fear of potential disapproval or even litigation by family members.

Further challenges can arise for care facility staff in relation to sexual relationships and displays of sexual behaviour amongst residents. Chief among these is the capacity of an individual with cognitive impairment to give consent. With patients with moderate to advanced dementia, who may have limited vocal capabilities, assessing capacity to consent can be especially problematic. As a consequence, the response of many care facilities in dealing with a sexual relationship of  residents with dementia, which is deemed to be problematic either by staff or by family members, is to separate the individuals who are engaging in the perceived “inappropriate” behaviour. This, however, can lead to adverse effect on the individuals involved- causing them distress, as well as potentially harming their physical and psychological health.

 

Case study

Dorothy is 82 and Bob is 95. Both are residents of the same care facility and both suffer from dementia. Dorothy’s husband died from a heart attack sixteen years ago and Bob has been widowed three times. Bob had been popular among the female residents but had never displayed any interest in return. When Dorothy moved into the care home, however, Bob’s attraction to her was immediately apparent and the feeling was mutual. They began a courtship, spending all their time together. She would play the piano and they would sing together.  After a short while, their relationship became sexual and Bob began visiting Dorothy’s room at night to stay over. He even proposed to Dorothy and began referring to her as his wife. Although neither management at the facility nor Dorothy’s family had a problem with the couple, Bob’s son was not happy when he found out about the relationship accidentally when he walked in on his father and Dorothy in bed one day. He felt that his father “should be old and rock in the chair” and was concerned that Dorothy was taking advantage of his father. The private duty-nurse who tended to Bob was also uncomfortable with the relationship. At first she thought it was cute, but, for religious reasons, started to object when the relationship became sexual and she asked staff members to help keep the couple apart. Conflicts arose between staff as to what was the best course of action. As a result, Bob and Dorothy began secretly meeting when they could and their intimacy became “more open and problematic”. On one occasion the care facility manager had to intervene to stop Bob from “pleasuring” Dorothy in the lobby whilst Dorothy had a strategically placed pillow on her lap. Dorothy’s daughter was happy for the relationship to continue and was concerned at the distress that attempts to separate the couple were causing her mother. A mediator was brought in to try to resolve the conflict but a resolution was never reached. Finally Bob’s son had Bob moved to another facility. Dorothy never got to say goodbye. Dorothy’s health began to decline after Bob’s departure- she became withdrawn and depressed, she stopped eating, lost nine and a half kilos and had to be hospitalised for dehydration. Her doctor thinks the loss may have killed her, only for her Alzheimer’s caused the memory of Bob to fade away relatively quickly (Henneberger, 2008).

 

Reflective exercise
  • How did the lack of a clear organisational ethos or policy on resident relationships impact this situation?
  • How might good communication between all parties have been facilitated?
  • What was the influence of culture and religion on the situation and how might these issues have been addressed?
  • Can you suggest what actions might have been taken that may have produced a different outcome?

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This project has been funded with support from the European Commission. This publication reflects the views only of the author, and the Commission cannot be held responsible for any use which may be made of the information contained therein