Dementia Myths vs Realities 4/5: Sex, Intimacy and Relationships
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Danuta Lipinska
Sex and intimacy have been described as the last taboo in dementia care. As counsellors seeking to engage with the whole person, we cannot afford to dismiss their potential place in our clients’ lives so easily. In the penultimate part of her myth-busting series about the value and diversity of counselling people with a dementia, Danuta Lipinska talks sex – taking in client disinhibition and therapist discomfort, legal and reproductive health contexts, and the challenges of internet dating when you may not be able to remember your way home.
Myth 4: Sex, intimacy and relationships aren’t relevant when counselling people with a dementia
For some people, sex is indeed an activity of daily living. Our sex lives do not immediately diminish with a diagnosis of a dementia, but may be changed over time. Some people would rather enjoy a bowl of popcorn and a box set on TV. However, while acknowledging the potential impact of age, diagnosis, changing appearance and the challenges of fragile neurology, as well as the potential for deep tragedy, trauma and sadness with regard to sex, we dismiss the importance of these life-enhancing aspects of humanity at our peril. The focus of my recent book highlights sex and wellbeing whilst living with a dementia.
Supporting sexuality in women and men living with a dementia is, firstly, a human rights issue. In the UK, 850,000 people over the age of 65 and 43,000 not yet 60, are living with a dementia. Some of them are enjoying sex, or would like to. Of course, balancing rights and risks is challenging. The sex lives of clients with dementia need to be explored within the context of the law, with thought to capacity, consent, equality and disability, and on an individual basis. A good resource for considering the legal and ethical aspects of this area of work is this guide from the Royal College of Nursing.
As therapists, we can support explorations of sexuality, intimacy and relationships in the context of behavioural and emotional changes that arrive with dementia. You may feel less than comfortable engaging in conversations about sex with someone who could be your parent, grandma or great-grandma. In order to do this effectively, as individuals we need to challenge our assumptions and stereotypes about ageing and learn more about dementia. For instance, how does it affect emotion, behaviour and the memory supporting sexual experience and expression? If dementia affects the inhibiting mechanism in the brain, sexual disinhibition may emerge. This can surprise, and present multiple challenges that the client may or may not be aware of.
Many people with a dementia will also be experiencing intimate non-sexual relationships that enhance their lives, irrespective of cognitive change. Intimate relationships without sex, and sexual relationships or experiences with or without intimacy, exist within the rich diversity of sexualities, preferences, and identities, across the heterosexual, LGBTQI+ spectrum, including those identifying as asexual, or as celibate through choice or circumstances.
For others, sexual pleasure might be reduced as a result of genital and reproductive health issues. When these are diagnosed and treated, a person’s interest in and opportunities for sexual fulfilment may be restored.
We may also find ourselves working with clients who are single, and still enjoying a casual, varied sex life. For these clients, whether straight or LGBTQI+, there may be other dilemmas: If I go on a date, will I remember my way home? If I meet a stranger via a dating app, should I tell someone where I am going and with whom? Can I tell my lover I have dementia? It is apparent to me that clients and their lovers need support, too.
Rendering these conversations relevant to 21st century living, we are becoming more honest and open; expanding our own horizons to be inclusive and willing listeners. Who is the whole person with whom we engage? How has this person living with a dementia experienced their sexuality and relationships prior to cognitive challenge? Which aspects of their intimate relationships are they going to miss that may bring psychological and spiritual distress, grief and depression? Loss and grief are no strangers to a life with dementia. Clients describe multiple losses around sexuality, desire, partnership, potency, intimacy and human connection.
For instance, a man in his late seventies, living with vascular dementia, was referred to me for counselling to address his depression. He felt it stemmed from the departure of his sex life with his wife’s menopause. We worked through many scenarios, and his ‘homework’ was to court his wife again from intimacy to intercourse. He arrived at one session with two thumbs up, grinning from ear to ear. “Twice!” he beamed. He died a couple of weeks later. I like to think that it was with a smile on his face.
Older adults now have the most expendable income, the most leisure time and best health and fitness in history. Sex, intimacy and relationships are a big part of their activities of daily living. The same individuals will have lived through the Sixties and Seventies. The sex, drugs and rock’n’roll and rave scenes may have been the backdrop to their lives. These are the men and women who, statistically speaking, will also be developing a dementia in later life.
How might we support them when they become clients?
Click here for a useful information leaflet about sexuality and relationships for anyone living with a dementia, or their partner or carer. Click here for a resource guide focused on the needs of older LGBTQI+ people using health and social care services.