Debate: Intimacy, dementia and the State

When should the state intervene in a couple’s private life? Thomas Middleton, 88 years old this week, is seeking to challenge the decision of the council to monitor his behaviour when he visits his wife in her care home. She has dementia and Parkinson’s disease. They have been married for 67 years.

Julia Salasky of CrowdJustice, a crowdfunding platform for funding legal costs introduces the debate on this issue and how Thomas Middleton is using her platform to fund a hearing of this question in a court of law.

Many of us can’t imagine what it’s like to be married for 67 years. Thomas and his wife ran a cinema club for 35 years, went dancing together five nights a week, had children. What happens when that person, with whom you’ve spent more years than most people have been alive, gets sick, gets dementia, gets Parkinson’s disease? What happens when she gets taken into a care home and they tell you not to kiss her?

In the US, there was a huge national debate around a man’s right to be sexually intimate with his wife who had dementia.

In Mr Middleton’s case, sex is not even close to being on the table. The care home has prescribed his ability to visit his wife, and to kiss her only when he comes in and leaves the care home, not “constantly”.

The case – like any individual family situation – has nuance and complexity. But it raises interesting questions of policy. When do we draw the line between the love and mutual understanding of a couple who have been married for 67 years – and the need for the spouse with dementia to give consent to physical intimacy? When should the State decide what’s in the best interest of (in this case) Joan Middleton, and when should that fall within the purview of her husband Thomas? And how do we ensure that not just Joan, but also Thomas – the spouse who is left devastated by his wife’s illness – is supported as she is in her end-of-life care.

As we live longer and longer lives, issues like Thomas’s will affect more and more of us -– whether it is a parent or a lover – or ourselves. Where do we want the lines to be drawn?

Mr Middleton is challenging the council’s decision to prescribe his contact with his wife under article 8 of the Human Rights Act – the right for respect for family and private life. He doesn’t qualify for legal aid (he has a tiny amount of equity in the family home) so he’s crowdfunding on public interest litigation site CrowdJustice, so that he can apply for a protective costs order that will protect him from losing his home if he loses.

Whether you support him or not, these are issues that matter. Weigh in here in the comments section, via Twitter (@DHorizons, and @CrowdJusticeUK) – or in private, with your loved ones.

This is adapted from a blog originally posted on Medium

By Julia Salasky

Julia Salasky is the founder of CrowdJustice. If you’re looking to raise funding for a legal case, be sure to check out their site.

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