Dementia care: Choosing whose rights matter

In scene 4 of Louise's story  you'll have gained a glimpse into the difficulties staff face in keeping residents safe yet also allowing them have freedom of choice. Louise is upset that she cannot venture out into the garden when she pleases, yet staff keep the residents locked in the building due to fears they may wander off. 

An individual's rights versus safety (of the individual and the public) can be very complex in cases of dementia and also very upsetting, see Ramesh's case below and the steps the family or a health and social care professional should take to ensure that their right are kept. 

Ramesh's case

Ramesh entered an assessment unit for dementia care following concerns expressed by his wife and daughter about his behaviour. He was acting in a sexually overt manner and creating great embarrassment to them. They seemed unable to modify his behaviour. The assessment unit also struggled to control Ramesh’s behaviour, and discussed what they should do at their unit conference meeting.

What rights does Ramesh have to express himself as he wants to?

Since sexually inappropriate behaviour can be very upsetting to caregivers, Ramesh’s rights have to be balanced with the rights to mental and physical wellbeing. Furthermore, inappropriate sexual behaviour in the public environment may cause offence and fear, and potentially be constructed as criminal behaviour.

I think the right thing to do is to explore all possibilities before curtailing his human rights, for example by checking whether his ‘abnormal’ behaviour is due to other underlying causes (discomfort or anger that he is unable to express in other ways). I’d also want to try ‘verbal therapy’ to calm his behaviour, i.e. discussing the issue with Ramesh if he is sufficiently cognisant to understand. Additionally, a physical approach may be helpful – for example, by choosing clothes that make access to his genitals difficult, or by distracting him with others tasks. However, if pharmacological remedies become necessary but Ramesh refuses to cooperate, I would accept that his rights may have to be overridden to safeguard the rights of his caregivers and society, under the provisions of the Mental Health Act/Mental Capacity Act.

It may be possible, once the root of the problem has been established to determine the cause of the behaviour, to control with hormone patches or some kind of medication. It may be a cry for attention or communication, so he may be calmed or distracted with an activity or a day respite visit where he can be himself in a caring environment.