Freedom to roam with dementia
Most people believe that if they ever had dementia, they would still want to stay at home for as long as possible. Sometimes the family of a person with dementia, or even the professionals caring for them are so afraid of risk that it fast-tracks a move to a care setting.
The anxiety for those caring for someone with dementia is usually because their behaviour disturbs the carer. It is well known that many behaviours that families find concerning are symptoms of stress in the person with dementia. The thing that should concern us is not that the people around them are disturbed, but that the person with dementia is unsettled and uncomfortable and is expressing this in one of the few ways left to them.
“Professionals use other terms such as “unwanted exiting” or “pacing” because they understand that the person is not going about randomly but heading out with a purpose.”
In dementia care, there are great philosophical discussions about what to call the distressed behaviour commonly known as ‘wandering’. This is probably the word that most relatives of people with dementia will use and understand. Professionals use other terms such as “unwanted exiting” or “pacing” because they understand that the person is not going about randomly but heading out with a purpose. Our problem is that we don’t know what their purpose is. Behaviour only appears to be pointless if you don’t understand what someone is thinking. It may be that we know that their purpose is now futile, such as setting off for work decades after retirement. In that situation, there is a lot that can be done to help. Because the need to leave or pace about is made worse by stress, all the usual strategies for reducing stress should be employed, with a focus on what works for that individual.
So, what can be done?
What you need to do depends on the sort of behaviour that you are seeing. How strong is the person’s need to go somewhere? How fast do they move? Do they get disorientated? If the person is heading in a determined and rational way for something that is no longer there, the strategy is different from when you are just managing an overwhelming restlessness. Pacing and restlessness within a confined space may be the result of discomfort, such as pain or the need to find the toilet. The person with dementia may be too hot or too cold, bored, or worried because they’re not sure where they are. They may be hearing noises that are unsettling because they do not understand what they are hearing. They may be hearing voices or hallucinating. Your response must be tailored.
“If the person is trying to leave the building you can ask in a respectful and gentle way where they are going. Ask ‘What is it you want to do? Can I help you?” Arguing with a person with dementia is always a bad idea”
It’s always essential to try to work out the reason. If the person is trying to leave the building you can ask in a respectful and gentle way where they are going. Ask ‘What is it you want to do? Can I help you?” Arguing with a person with dementia is always a bad idea so it's good to approach this question in a way that indicates you’re facilitating rather than trying to prevent the person from doing what they want. If you know the person, you may have a chance to anticipate what is they usually want when they start to move. In response, for example, you may be able to take them for a walk each day, right at the time they always want to leave, or if you know what television they like, you can put on a disk that will distract them at the key time until the urge to go away passes.
Families may resort to locking the door. Because this will anger and frustrate the person, they will probably redouble their effort to get out and take their feelings out on the carer. Whatever happens in a care home or hospital must be within the right legal and practice frameworks in the part of the UK where you live, but the fundamental issue is that deprivation of liberty is a serious and should be carefully considered because it will be legally challenged even if it happens at home. People with dementia are legally protected from arbitrary decisions by family members to stop their freedom of movement. Proper advice is needed.
Adopting a plan (for next time)
If the person has gone missing and been lost once, it’s important at this stage to adopt a plan for the next time. The police will take an interest in people who are likely to go missing because of dementia, and you should talk to them. They will advise you on how long you should search around your home before calling them, which might be as short as 15 minutes. A rapid response means that the person wouldn’t have gone far making it easier for police or volunteers to find them. It is very useful if the family can provide a recent digital photograph of the person, and it’s worth considering taking one each morning, just in case, if you’ve got someone who likes to go out and about. There are many locator devices available to purchase online and you can use a mobile phone or smartwatch for this purpose. Ethical considerations about tagging a person will be a lead. If discussion takes place at an early stage while the person can understand and give consent. The non-profit website ask Sara shows a wide range of devices, including where to source them and a price list. Renting may be more economical as this behaviour may only be a phase.
Balancing risks and QoL
Keeping people with dementia safe involves a balance of risks. Going into a care home is not risk-free and using technology is a good way of keeping the person at home for longer and maximising their quality of life. When I’ve got dementia I want to be free-range as long as possible, so I hereby give permission to my attorney to tag me in any way they like, as long as I can go for walks. You’re now my witness!
