|‘While sexuality and sexual intimacy may change with age – and dementia – they do not disappear, and positive physical relationships are good for mental health and wellbeing.’ Photograph: ImagesBazaar/Getty Images|
Frank and Mary loved each other’s company. They would sit together and hold hands. Both had dementia and were living in a care home. Their closeness made them happy and their families were delighted.
Mary wasn’t bothered when Frank called her by his wife’s name, nor that he began to intervene in her day-to-day life. They were besotted. He started sitting her on his knee, and, after a few drinks, they could be found canoodling in the corner.
This is not a fictional scenario. It is a story told by a care home worker that touches on a taboo about dementia and sex. It is now well established that while sexuality and sexual intimacy may change with age – and dementia – they do not disappear, and positive physical relationships are good for mental health and wellbeing. With the numbers of people with dementia expected to soar from 850,000 (40,000 of them under 65) to more than one million by 2025 , the issue can no longer be allowed to hide in the shadows, campaigners argue.
“There isn’t much empirical evidence – and some care groups are more ready to talk about it than others,” says Colin Capper, head of research development at the Alzheimer’s Society, “but our experience is that this is a commonplace issue for care homes”. As a result, it recently launched “Lift the Lid” – a resource box aimed at encouraging discussion among care workers. The Care Quality Commission (CQC), which regulates residential care and the Royal College of Nursing (RCN) have both released guidance in the last year.
No guidelines can, however, make this a simple matter, admits Dawne Garrett, the RCN professional lead on older people and dementia care (whose PhD was on sexual intimacy in older people). Consent can be complex at the best of times; never mind the uncertainties of dementia. “Legally, it’s a nightmare,” says Garrett. On the one hand, you have an adult’s human right to choose their relationships and continue to be sexual if they wish (and this includes the right to make “bad” decisions). On the other, there’s the need to ensure sexual activity is consensual and protect vulnerable people from abuse.
The core problem, says Alex Ruck Keene, a barrister specialising in mental capacity, is the clash between these “two competing policy goals – both absolutely laudable and absolutely incompatible”.
The law is, in one sense, very clear: sexual activity (a broad term that can cover everything from intercourse to kissing) requires consent. This involves being able to understand what you are consenting to and communicating this at the relevant moment. Sexual relations are explicitly excluded from the best interests test so nobody – not even with legal power of attorney – can consent for you.
“None of us would want a world in which consent is not essential,” says Ruck Keene. “Imagine what could happen in a dodgy care home.”
But he adds: “This does mean the law can be very harsh.” If you’ve been married for 50 years, for instance, then one of you gets dementia and is deemed not to have capacity, continuing a sexual relationship makes the healthy partner technically a sex offender, he points out. But, if both partners lack capacity, they are legally safe, though an enabling care home worker could still find themselves in breach of the Sexual Offences Act 2003.
The public nature of life in a care home adds another layer of complexity to this normally private matter, says Esther Wiskerke, who trains care home staff about dementia and sexuality. Sexual attitudes are deeply, culturally and religiously ingrained and a simple (totally unsexual) touching exercise between participants in one of her training sessions in a care home in Kent quickly reveals personal differences. Care workers need to be very conscious of their own beliefs to ensure they don’t affect residents, says Wiskerke. “Whether someone can carry on a relationship should not depend on who is on shift.”
Everyone who is attending her training session, hosted by family-run Hallmark Care Homes, has first-hand experience and stories ricochet about the room. Many include the difficulty of dealing with the residents’ families – usually their children (rarely the best people to consult about a person’s sexuality) who are frequently also paying the bills. Some carers feel they have to take relatives’ views very seriously, others say, “it isn’t about them – it’s about the resident”. One carer says she is (unusually, she adds) about to take a resident out to buy a vibrator and that, no, she will not be mentioning this to the woman’s daughter.
In the case of Frank and Mary, their adult offspring found their parents’ increasingly intimate relationship disturbing. A meeting was called and the decision made to separate them – moving him to another floor.
“It destroyed her,” Millie, then a young care worker at the home, tells the other participants. “She became really challenging. It was so cruel. We had no idea how to handle it. There was no training, no support. We failed them. It was awful, awful for everyone.”
So how can older people with dementia be allowed to have relationships without weakening the law that protects them?
First, says Ruck Keene, we need to bear in mind that, “the [legal] bar for capacity to consent to sexual relations is deliberately set quite low”. Nobody wants to “barge in and interfere” if it isn’t necessary, and mental capacity is specific to each behaviour so just because you can’t handle your own bank account or run your own bath, doesn’t mean you can’t consent to sexual relations.
The CQC guidance is clear: people with dementia “can, and do consent to sexual relations” and care homes will now be judged on allowing and – in the right circumstances - supporting them to do so.
Care home staff do have to be vigilant and notice non-verbal signs of discomfort, says Wiskerke. If in doubt, she adds, it’s time to call in the multi-disciplinary team to assess and collectively decide what is best. “Managers need to have big shoulders and not be too risk-averse,” says Ruck Keene. “It is clearly not in the public interest for the Crown Prosecution Service to prosecute in the case of a loving relationship where nobody believes there is any problem, even though it is technically breaking the law.” But the fear that this could happen may distort how institutions treat their residents. CPS guidelines of the type recently produced for deciding when to prosecute in assisted dying, could be helpful, he suggests. But there are no plans for such guidance yet.
Ruck Keene is involved in a project exploring whether the law should be changed to enable a person with deteriorating cognitive ability who is in a long-term relationship, to provide some kind of conditional advance consent to intimacy with the existing partner. He admits it is not proving easy.
While the legal situation may be far from perfect, the only way forward is to break open this taboo and talk honestly, discuss, train, share best practice, and take each case on its merits, mapping the best path through this intimate minefield.
Some names have been changed
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Sex and dementia: the intimate minefield of consent in a care home