A triple whammy of stigma

A fascinating symposium explored the developing field of sexuality among older people. Among discussion of the marketing of Viagra and body image in the older LGBT population were talks on wellbeing and sexuality in later life and those with dementia who identify as LGBT.

Sharron Hinchliff, who works within the School of Nursing and Midwifery at the University of Sheffield, said sexual wellbeing was a relatively new term and has only recently been examined within the older population. Dr Hinchliff said that, despite belief in popular culture, many older people remain sexually active though there are some physical barriers to sex, including issues with the genitals themselves, physical health and medications which may interfere with sexual functioning.

Her own work has found people feel frustrated, rejected or distressed when there is no sex in their relationship. She went on to cast a critical eye over much of the research into sexual wellbeing, pointing out that there’s only a small amount of such research on older people and that most is focused on heterosexual sex. Much is also quantitative, Hinchliff added, and so we know little about older people’s experiences. Viewing problems in sex within a biomedical framework as a disease or dysfunction means that people see them as an inevitable side of getting older and may not seek treatment or advice for their problems – even if it’s impacting on their lives. 

Hinchliff suggested potential future directions for research including the need to define ‘older people’; some research classes those over 50 as ‘older’ while other research focuses on 70-plus. The difference in experience between the two groups can be vast, and Hinchliff said it was also important to acknowledge that not all older people wanted to be sexually active.

Joanne Brooke (University of West London) has worked in a team of researchers looking at people with dementia who also identify as LGBT, and the different needs and barriers of this group. The literature in the area is extremely sparse, Brooke said, and many studies did not set out to look into LGBT people and dementia but only made mention of the population. There were no studies exploring the challenges transgender people face in dementia care. Looking at work from 2006 onwards – when important papers changed care, and there was more discussion around the human rights of people with dementia – Brooke identified 14 studies for inclusion in a scoping review. The main theme seen was a lack of recognition and relative invisibility of the LGBT people within dementia services. There was also a fear of disclosure of sexual orientation to healthcare professionals.

Brooke said the role of stigma was important: older LGBT people are doubly stigmatised and when dementia is added into this mix they feel even more so. Older adults are also often presumed by carers to be heterosexual or not sexual at all, and sex among older people with dementia is seen as a symptom rather than sexual expression – even without context of a person’s previous sexual behaviour. Also consider that many older LGBT people will have grown up in a society which pathologised homosexuality. During dementia people may revert back to previous traumatic experiences, and as a result some of the LGBT population may fear coming out to healthcare professionals.

Brooke concluded that while LGBT people are not included in dementia research, their voices will not be heard. She suggested that sexual and gender minority monitoring data needed to be routinely collected offering an opportunity to determine the number of LGBT people with dementia.