Love, sex and dementia: One couple’s story

She drove a Porsche, was immaculately dressed and travelled the world for work and pleasure.

An avid reader, Lottie* had an encyclopaedic knowledge of the stock she purchased from around the globe.

Through her work, she met Brian*. Both previously divorced, they became lovers and married. Brian and Lottie had highly successful careers, lived a life of luxury and enjoyed a good sex life.

But at some point more than a decade later, Lottie’s brain began to deteriorate.

She became unable to make decisions at work and the family noticed unusual social behaviours.

“As we were driving along she would just say the names of shops. She would say “JB HiFi”, which is a classic of FTD [frontotemporal dementia], it’s this repetitive thing,” Brian says.

At 64, she was diagnosed with FTD, also known as Pick’s disease.

Unlike Alzheimer’s, where memory loss tends to be an early signal, the rare neurodegenerative disease usually affects personality and basic functioning.

After she left work, Lottie continued living at home for several years and was able to go shopping and to the gym by herself for much of that time.

The couple went out regularly for social dinners, but that became more difficult as she became incontinent.

Their relationship slowly shifted from one of mutual lovers to carer-patient.

“By the time we’d identified that there was a problem she was kind of like an 18-year-old, by the time she went into aged care, she was like a three-year-old,” Brian says.

“So sexual relations were like paedophilia – it wasn’t that she didn’t seem to want to make love, but it just felt sick.”

In all of Brian and Lottie’s appointments with medical professionals, sex was never discussed.

Nor was the mental health of Brian as a carer.

Brian confided in the only other people who would understand – a new social group of people caring for partners with FTD.

Many of them shared their experiences of depression and isolation.

Some members of the group had retired to become full-time carers.

When the time came that Lottie could no longer do anything independently, Brian made the difficult decision to put her into care.

“I couldn’t still be running a business. I was a mess,” Brian says.

“I realised that it made more sense for me not to become a lonely, depressed, suicidal carer.”

Have I been visiting enough? Should I take her out with friends? Should I sell my business and become a full-time carer? These are all thoughts that plagued his mind.

Brian watched as the visits from friends dwindled along with Lottie’s faculties. Social outings completely dried up.

And then a new dilemma came when Brian met Faith*.

“Another lady came out of the closet at a carer’s meeting and said, ‘I’ve re-met my first boyfriend and we’ve started a relationship’,” Brian says.

“I had already started a relationship with Faith, so I came out too.”

Brian and Faith had met a cafe at the peak of his loneliness.

“I would sit with my phone and go through the names of all of my friends and think, who can I call and talk to?” he says.

“If you don’t keep up those contacts with friends, because of what’s going on in your life, they drop you.

“I don’t like being lonely.”

The ‘other woman’

He was upfront with Faith about his situation.

“When we first met he said, ‘I will always love her but she is like my daughter’, I remember that,” Faith says.

Faith said it wasn’t an easy decision to pursue a relationship where she would be ‘the other woman’.

But after a couple of years of emotional turmoil, she decided she would rather live with the guilt than be miserable.

“In my mind it was completely wrong, he was married,” she says.

“There was guilt. I had to overcome those feelings. For me it was getting my head around the really complicated situation. I never planned for this. In the end, we chose life.”

Brian says while he has moved on to a new love, he is still there for his wife.

Over the years he has continued to visit Lottie at the aged care facility around the corner from the Melbourne home he shares with Faith.

Gradually they have told family and friends, most of which they say have been accepting and understanding.

Brian says while others will not agree with their life choice, and moving on to a new relationship is not the answer for everybody, medical professionals need to be having the conversation about sex and relationships with carers.

“It doesn’t mean that that’s going to mean that the person stops being a carer,” Brian says.

“In my experience I think what it means is some of those carers are more likely to be able to be good carers.

“I’ve seen a lot of people get depressed in our carer group. Healthy, happy, sane carers are good for everybody.”

Brian and Faith are sharing their story this week at a forum called Let’s Talk About Sex, hosted by The Council on the Ageing (COTA) and Alzheimer’s Australia.

“One of the quickest ways to clear a room is to talk about sex and older people,” Alzheimer’s Victoria CEO Maree McCabe says.

The aim of the conference is to raise issues around sex and intimacy as people age.

The needs of carers will be one of the areas of discussion.

While Ms McCabe says it will not be encouraging people to find other partners, medical professionals need to be taking into account all of the couples’ needs.

“It’s a very difficult situation in terms of the sensitivity for families and the people involved,” she says.

“So it’s really important that we hear from couples who are actually living in this situation and how they are managing it.

“[Medical professionals] need to be having the conversation about how dementia can affect all areas of peoples’ lives. It’s not just their physical functioning or their cognitive capacity.

“It’s kind of the ageist attitude of if you’re older so you don’t have sex, so it’s not even mentioned.”

*Names have been changed to protect privacy.