Sex and dementia

sexuality 2The topic of sex and dementia is one I have been thinking about writing on for some time, and now seems the right time to post something about it. Many have written and talked about people with dementia and sexuality, including writing articles and books about it, but so far, I have not found very much actually written by the cohort it relates to, that is, people with dementia.

I suspect it is time people with dementia speak up, and when I did speak up about the exclusion of people with dementia on a panel about sex and dementia at Risky Business, the HammondCare conference in 2014, I was not treated well (by some) for speaking up about it. But, it is right we are involved, and have a voice on this topic. After all, it is the most intimate part of our lives.

There is a conference coming up soon in Melbourne, sponsored by COTA and Alzheimer’s Australia Victoria on sex and dementia, and still, after much prompting, there has been no announcement of a speaker living with dementia, invited as a plenary speaker on this topic. Of course, I will keep advocating for one to be invited.

It seems unreasonable that people without dementia write and speak about this topic, with including us. It is one that is intimate, deeply personal and very private, and a topic that so many assumptions have been made about it and us.

Just because we have dementia does not mean we don’t want to have sex, although many people with dementia can stop wanting to have sex due to things such as losing their sense of self or the changed relationships brought on by the symptoms of dementia. I suspect my BUB wishes I had a type of dementia where I wanted sex more often, and perhaps was less inhibited… who knows!! This is a blog that is trying to talk about a very personal topic, and hence, is probably going to ramble on rather a lot. There is much to think about… and writing about it here, impacts him, so I have to be sensitive and careful.

I came across this article Better sex-and-dementia care call some time ago, and it is a useful read particularly as it highlights the lack of training of staff in this area, and how difficult it is for adult children of people with dementia to accept their parents may still want to have sex or be intimate in some way. Of course, if it is the husband or wife of a person in residential care, who has dementia and is being intimate with someone other than their partner, this is painful and challenging, and needs to be dealt with very sensitively.

But it is a hugely personal topic, and when it comes to sexuality and dementia, the only people who really can talk authentically about it are people with dementia and their (sexual) partners, married or otherwise. They [we] must be included in these conversations. It is a basic human right, and no organisation can be dementia friendly if they don’t include us in everything that matters to us, or affects us.

Without including us, the isolation, stigma, discrimination and the many myths of dementia simply continue…

25 thoughts on “Sex and dementia

  1. Dear Kate,
    Thank you for your support through social media of the Let’s Talk About Sex: Relationships and Intimacy as We Age conference, being presented by Alzheimer’s Australia Vic in partnership with COTA Victoria, to be held in Melbourne in September.
    As the Chair of the Victorian Consumer Advisory Committee I can confirm that Victorian consumers have been consulted a number of times about the conference and that our feedback has been incorporated into the event planning. Feedback on a topic like this is of course very diverse and I know that both organisations have tried to reflect this in the program. I feel confident that Victorian consumers, and COTA Victoria’s, have been given the opportunity to share their views and that those views have been listened to.
    The conference organisers have announced a few speakers already and I am sure there will be many more announced as the conference approaches and the program is finalised. I am aware that the event will be giving a voice to a number of consumers. With respect to dementia, we have ensured that people living with dementia and carers have been included. I want to assure you that both organisations have actively sought the participation of numerous consumer voices in a range of ways that suit their preferences and the level of involvement they are comfortable with. The confirmed program will be released closer to the event and I am sure Christine and the team will be planning maximum impact for media attention.
    To provide some background, the conference was inspired by Victorian consumers who advocated to Alzheimer’s Australia Vic about the important need for a discussion within our community about sex, ageing and dementia. Alzheimer’s Australia Vic responded to this feedback and consulted with COTA Victoria to develop the conference plan, our aim being to represent people living with dementia, their families and carers as well as all older people more broadly.
    Both organisations have invited consumers to get involved and have promoted the conference through various channels such as hard copy and electronic newsletters; websites; direct mail; social media; paid advertising and coverage in mainstream media.
    In fact, since February there have been many public calls, through a range of channels, for abstracts from people who would like to present at the conference. We were delighted this call even got mainstream media attention as it was our aim for as many people as possible to know about the conference and add their voice.
    Thanks again for being such a passionate contributor to the conversation and I hope this allays some of your concerns.
    Kind regards,
    Primrose White, Chair, Alzheimer’s Australia Vic Consumer Advisory Committee,

    • Hi Primrose,
      Thank you for sharing your and the effort of others to involve people with dementia on the program.
      A couple of comments about yours are that 1. expecting people with dementia to write and submit abstracts, and then if accepted, pay for themselves to attend, is not dementia friendly, and often too difficult to do, and 2. I still believe a person with dementia should be a key note speaker on any program about dementia where the target audience is broad, and with over 47.5 million in the world, it would be possible to find someone.
      For any community, organisation or conference to be dementia friendly, inclusion is the first important step, and the slogan “nothing about us without us” whilst is said very often, I believe, as so many others with dementia, is still not being acted on enough.
      I hope you understand where we are coming from…
      Best wishes,
      Kate

      • Hi Kate,

        I agree that it is really difficult for individuals with dementia to submit an abstract. We all appreciate a bit of help in this area. As consumers we are aiming to provide a voice to the loved ones living with dementia in our care. As we support and try to best represent them, Alzheimer’s Australia Vic supports us – the consumers and the Consumer Advocacy Committee – to best achieve this. A number of consumers, people living with dementia and carers, have received support to submit abstracts and were able to provide a narrative around the care of their loved one living with dementia. Further support has and will involve assisting them with any transport, technical and presentation needs. It is important that both consumers and those living with dementia feel comfortable with their level of involvement. Alzheimer’s Australia Vic is very sensitive to this, ensuring no-one, consumer or individuals living with dementia, is uncomfortable with the level of their participation at any event.
        There will be speakers at the Conference who are living with dementia but the details of this have not yet been officially announced. My understanding is that dementia is one of the many topics being discussed because the conference is being partnered with COTA Victoria therefore many diverse groups will be represented, with dementia being one of these. The voice of those living with dementia will be heard at this event.

        Primrose

      • Hi Primrose, I appreciate your efforts, and am glad to hear there will be people with dementia speaking at this event. Thanks for the update. Of course, involving your own consumers in Victoria is important, but just like other speakers, if you can’t find them locally, there is always interstate and overseas to choose from, as there are over 47 million of us diagnosed with dementia now. Regards, Kate

  2. Here at Camden Carers we have often been asked by carers for some guidelines or at least a discussion on how dementia affects couples where one has dementia. This blog piece is very enlightening and useful – and I have saved it to form part of a discussion with our groups. Thank you.

    • Don’t forget to ask those people with dementia in your charge as well… even those with limited language skills may have some interesting insights for you.
      Only people with dementia know what is BEST for THEM.
      And I am so glad you are sharing this, and starting these difficult conversations.

  3. I am still surprised every time I hear you say that people living with dementia are not being included in these important conversations – why do we as “professionals” keep excluding those for whom we advocate? Baffles me.

  4. Oops, I forgot to check the “Notify Me” box so am doing it now. Thanks Kate, good knowing you! I have procrastinated about getting my book of poetry in the mail to you. Will do so soon.

  5. With regards to your continuing efforts at inclusion, I am so supportive!!!

    Your comment about your BUB wishing for more sex made me laugh. Glad that you tackled such a personal yet important topic.

    Gregory and my sexual activity slowly disappeared over the last five years. (God, I miss him!) Our drives lessened. I would agree some of that had to do with the change in roles in our relationship, as I filled more of a parent role. Part had to do with the dementia medications of Aricept and Namenda. Part had to do with our getting older. We did continue to be very intimate in our hugging and kissing and snuggling and that continues to this day.

    To briefly set the scene for the next paragraph, G and I came out Gay during a time when it was not accepted, there were few if any role models, if it was not against the law it was bullied. One kept totally private about ones sexuality. When one would go out to the bar (door located down an alley, no sign, usually thought to be run by the maffia) one was always looking over one’s shoulder and waiting for the police to raid. No charges would be filed but there were repercussions: a night in a cell, fingers printed, your name appearing in the newspaper as a part of the raid, your family finding out, and the loss of your job.

    Interestingly enough I think that Gregory (through his Dementia/Alzheimer’s) is revisiting some of the homophobia of that time. I will ask for a kiss and he will not want one or say “not right” or push me away. A little later he will accept my show of affection. We (I on our behalf) are very open about our relationship of 40+ years as a same sex couple at the facility and have not had any troubles at all with staff or other families. That has been lovely. Our relationship is just as important as all the other family relationships and that is good. Also, extra legal protections have been taken care of so that I can make decisions on his behalf and his biological family has always been very supportive of our relationship as well.

    Now that same-sex marriage is the Law of the Land, first in Illinois and now in the United States, Gregory and I have chosen not to marry. It is a bittersweet victory. First, Gregory is not of “sound mind” to be able to marry. Secondly and bluntly, healthcare for the poor is taken care of by the state or they die, the very wealthy never have had to worry about health care, the middle class takes care of itself until bankrupted. Gregory is on Medicaid and the state is paying for his care. If we were married I would have to pay for all of his care until all our money was gone. This way I can live comfortably enough and afford to have a private care man with him 6 hours a day 7 days a week to help provide for the social/emotional side of Gregory’s days. The facility provides excellent health care but there is never enough time for the residents to get enough social/emotional. Gregory and I are very fortunate. If our “Care Guy” is not a saint, he is a very highly place angel.

    I laugh that now Gregory and I are in the same place as the “hippies” and “common law marriages” of yesterday are when we say, “Why not just live together. Why do we need to get married. It is just a piece of paper anyway. Our commitment is to each other and that is what matters.”

    Read more: http://mhorvichcares.blogspot.com

  6. Kate, kudos’s to you for blogging about this important and extremely personal topic. For many, discussing sex in any fashion is an uncomfortable and perhaps taboo topic. For those of us with dementia the same can still be said. For you to extend an offer to be an expert on this upcoming panel is commendable. All of us have much to learn from each other. Open dialog is the only way this is going to happen. Including you as a speaker makes complete sense. Time for all people to listen to us as we are the experts on sex and dementia – even if we are shy about talking about it!
    MB (Big Hugs)

    • Thanks MB… although I am not advocating for me to be invited, just someone actually living with a diagnosis of dementia. These days, there are so many of us speaking out to choose from, it is inexcusable to say ‘we can’t find someone’.

  7. Love this Kate! Timely too with #COTA conference & “Let’s Talk about Sex” coming up.Twitter chat tonight too on #LGBTIQdementia led by @diversalz.

    We two(with J) began a conversation about this over G’n T’s/Moscato after your graduation😉
    I said little at the time….it cut too deep.

    I realize that the woman I love had dementia when I met her….maybe even a few years before that. She lost interest within a year: I thought I’d finally encountered the dreaded “lesbian bed death” (which I’d always thought of as an urban 1st world myth😉)
    But it was part of her changing world, an unwillingness to give yet another bit of herself away. Self-preservation. Protection. Walls of necessity.

    I hurt badly for years. “Boston marriage” imposed by her- and no choice for me. Forced celibacy at 57-for the rest of my life?- or take a lover…not. Hell.

    It happens for many people BTW, ie asexuality….there’s a whole LGBTIQ dialectic around this, but I think it is not so much about gender/sexuality but much more about how we see ourselves (and as we age, we hurt).

    I “adjusted” to the “Boston marriage” and lost a huge part of myself. I lost my joy, my “mojo”. I stopped dancing. My back got worse till my life and work were dominated by chronic and acute pain till I could no longer work. I went to counselling. ..but nothing could change my real life situation.

    Things have shifted between us over the past few months. Maybe V has less to lose/risk now. Maybe I’m prepared to risk being rejected again and am no longer afraid of that….not sure sometimes.

    But as a lifelong advocate of free and responsible love I reckon we should learn to toss the baggage in the overnight locker and take/give all the tenderness and passion as it comes…and make room for it. Make adjustments for our disAbilities too.

    I’m not the jealous type: I’ve told V it won’t upset me if she ever takes a fancy to some willing woman in the future. I just want to see that amazing smile on her face. 😊

    Love to you.💋

    • A wonderful, thoughtful, brave and honest post (much more than a comment) to my blog on this… thank you dear Lynda for sharing such intimate parts of your life, as you face dementia alongside your beloved Veda. I really love the bit where you say, “toss the baggage in the overnight locker”… big hugs and love to you both xoxox

  8. Good piece Kate…I think the Melbourne Conference is a step forward, but agree people living with dementia should be out front and centre at the conference and disappointing if they are not. One other thing that complicates the issue is when a person has lost capacity to give informed consent and how that should be managed.

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