Sexuality in dementia

Sexuality in dementia has been a hot topic recently in Australia after a TV debate was conducted about the appropriateness of older people engaging in sexual activity.

I guess my focus has always been on the dementia care context so my comments are with that in mind. Today an experienced and sincere person asked me if it wasn’t better to not allow someone to interact sexually with another person if it was contrary to their past values and beliefs. This person is very person centred in her approach and takes the wellbeing of the people in her care very seriously so I listened and thought hard about how to respond.

She is a person who has clear values and holds them dear. She stated that she would want her children to uphold her values for her if she had dementia and was confronted by someone drawing her into a relationship that was contrary to her current values.

I listened and heard the word “current”. It reminded me of a central feature of my beliefs about humanity. We are dynamic, we change and constantly update, modify, adapt ourselves in response to the people, places, events and situations we find ourselves in as our life unfolds. What is current in my life may not be what was true for me earlier in my life. I am still the same person, Bernie, but in some ways I am different. I see the world differently, I feel differently about myself, and I relate differently with those closest to me. My priorities about close relationships have modified and adjusted as I have matured and changed in response to life.

We are born human beings and become human persons in the context of relationships that shape us and make us who we are with our unique history and personality features, beliefs, values and priorities. We do not exist, except in theory, outside the context of the relationships that make us who we are. We are only who we are because of the relationships that shape us, the people who love and form us.

So when I am older and have a dementia my priorities may change and become shaped by the people, places, physical disease and neurological disease that shapes my ability to relate, feel, think and process reality. I will also be shaped by the people who treat me with respect or not, look after my needs for affection and attachment, comfort and identity, who remember who I am and treat me well.

What I want then may be radically different to what I want now but it will still be me, just me with all my stuff that makes me who I am then as opposed to now. So when my colleague says that she wants to be treated with her current values in mind, I think of the changes that can and must take place in my life as I age and change. Without the dementia I would probably shift and change in my values somewhat. I look at older adults I know and see how they have changed over the 40 years I have known them. Life changes us and so my sexual needs, preferences, and values will probably be different when I am 80 with or without dementia.

So I hope the staff around me in the future have an eye to the fact that I am who I am in the moment and not frozen in time. I have evolved and become who I am and should be treated as the person I have become not as some version of me that used to be relevant and that some relative has remembered about me and told the aged care staff.

To the aged care staff that care for me I say, please look at what I am currently showing you. Look at my face and my body and see me for who I am today, not who you think I once was. What I want to do and engage in now is what is important from a wellbeing perspective. My wellbeing is going to be shown to you on my face and in my choices that I make in the moment, not because some relative told you I used to be an accountant or a farmer. What matters is that today I want to hold a doll and carry it around and nurture it as I once nurtured my little children. Or perhaps I am the man who wants to sit with a lady and hold her hand even though her husband comes in to visit her. If my dementia is not allowing me to appreciate the social effects of my actions I am going to be shaped by my feelings and sensory responses. How I feel in the moment sitting with her by my side is likely to be the most important thing to me. Her smell, the feel of her soft hand in mine and the sounds of her small voice beside me are all I need to feel like this is where I want to be today.

So I ask you all to consider what your frame of reference is when you assess who someone is and what is right for them. Always have a ‘wellbeing focus’ and ask yourself, what signs of wellbeing am I seeing? – not what values would the person want me to be upholding. Those values might be important to them still or they might not – the only continuous thing in their lives will be the need to experience and maintain wellbeing in whatever way they can – just as you and I do now.