How often do we find these three words ‘dementia‘, ‘sex‘ and ‘wellbeing‘ in the same sentence? asks Danuta Lipinska, author of Dementia, Sex and Wellbeing. In this article she tackles what is still considered the ‘last taboo’ in dementia care – sex and intimacy – and offers an alternative ‘wholistic’ approach where the onset of dementia does not have to mean the end of a healthy sex life.
‘Strange bedfellows’ are defined by the Oxford dictionary as ‘unlikely companions/allies’.
How often do we find these three words ‘dementia’, ‘sex’ and ‘wellbeing’ in the same sentence?
‘Strange bedfellows’ seems a fitting descriptor for what may be perceived on the surface at least, as an unlikely liaison. But companions and allies they most certainly have become in my experience. First as a nurse, then as a psychotherapist, supervisor, trainer and caregiver supporter with a specific focus on cognitive change. These experiences have informed and underpinned my training qualified counsellors to offer dementia specific counselling to women and men living with a dementia as a condition or as a caregiver.
Why might it be unlikely that a person living with a dementia might wish to have a sex life? Sex constitutes not only a means to experiencing ‘wellbeing’ (mental, physical, emotional and spiritual wellbeing) but might also be an ‘Activity of Daily Living’.
Sex is less likely to be a concern prior to ‘diagnosis’ and becoming associated with the label of patient or client. Yet I have learned that it is in precisely in those early days that the need for information, practical advice and support could assist in the continuation of a person or couple’s sex life, thereby enhancing their sense of wellbeing.
Working in ‘wholistic’ and person-centred ways does not necessarily mean that professionals, with the best intentions will think about me as a sexual being with a history, a present, and a future should I find myself living with a diagnosis of a dementia at some point. This would be a tragic turn of events for me and for my husband.
For how many other partners, or single sexually active/interested women and men, is this a further hidden, often unmentionable additional deep loss and sorrow? Still considered a ‘last taboo’, this seems even more so when cognition is impaired, and behaviour may be more or less compromised as a result.
Given that sex – alone or with others – is a very human and not infrequent activity in response to loss, death and stress of all kinds, it should not surprise us that seeking stress relief and affirmation of potency and identity through sexual feelings and behaviours may be increased for those living with a dementia. But for some, living with a dementia also brings with it not only changes in behaviour and self-confidence, self-esteem and fatigue, but also altered levels of libido, and functionality of genitalia.
Of course, feeling sexual, sensual and lusty may be furthest from some people’s minds, bodies and spirits. But many women and men assert that they do not feel ‘ill’ or ‘unwell’ at all, living with a dementia, and in some cases they are more body aware and more fit than they have ever been in their lives.
We have learned what happens to people when ongoing loss and grief are unacknowledged and unspoken. We know that the relationship between depression which may emerge (often undiagnosed and untreated) and dementia in combination will serve to increase the symptoms of each condition. How often do we include loss of sexual activity or sexual relationship or partnership(s) to the list of possible losses associated with a diagnosis of a dementia? And more importantly, how to support that person(s) to remain as involved and expressive in this domain as they would choose to be, and for as long as they desired.
Who do we speak to? Where do we go for that information or to have that conversation?
As excellent as they are in scope and diversity, most English-speaking websites relating to dementia have little in the way of helpful information concerning how to navigate this sensitive and necessary expression of our human rights. Most sites assume sex takes place between heterosexual couples, at home, lying down and at night. They say that although a sexual relationship is normal, it may become behaviour that is troublesome, unwanted, inappropriate and a ‘problem’ to be solved. There is little to support a single person, LGBT+ or straight in how to find, maintain and safely engage in sexual experiences alone or with other(s). The realities of the myriad sexual experiences available to us would be impossible to know or to address on an individual basis. However, ensuring an open, truly person-centred and wholistic approach to the most intimate yet most common means of human relating and stress relief would be a great start. Inadequate, outdated information and support to those living with a dementia, regarding sexuality, sensuality, intimacy and relationships can be a thing of the past if we all commit to making it so.
But it is not an easy topic of conversation to navigate, even in this day and age of reality TV and explicit sex in films and the availability of pornography. Indeed, other areas of supposed ‘privacy’ are also made more public and conversations are held with medical practitioners about our bank accounts, living situations, spirituality, funeral plans and bowel functions. And yet, sex receives the least attention as it is seen as too ‘personal’ or ‘private’, ‘intrusive’ or ‘disrespectful’ to talk about to our ‘elders’ or our peers or juniors living with a dementia. Could this be the area of a person’s life that the missing of it causes the most distress and unhappiness, and to use Kitwood’s word elicits the experience ‘ill being’? (Kitwood, 1997)
Given that the biggest sex organ is… the brain, it makes sense to me that at least a passing familiarity with the particular organ and its relevance to our sex lives is not only interesting but essential reading for professionals and clients/patients and their partners alike. How does the experience of cognitive and functional change associated with a dementia affect our most private and intimate selves? How is sex influenced by aging, ageism, sexual preference and gender, values, family history, culture and spirituality, the socio-political-economic-medical/scientific zeitgeist?
It is for those of us, and not the fainthearted, who may wish to initiate these conversations and support those who may wish to continue this enjoyable and identity affirming aspect of (daily!) living that I wrote my book Dementia, Sex and Wellbeing (2017, Jessica Kingsley Publishers).
Danuta Lipinska has 30 years’ experience teaching and consulting internationally on adult sexuality and dementia. Her previous book, Person-Centred Counselling for People with Dementia, was also published by JKP, and has since been translated into German.
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