As we come to the end of a year that has again been extremely challenging, many families with loved ones who are living with dementia may be wondering what they can do to make a tangible difference to their relative’s life in 2022, especially with so much pandemic-related uncertainty and many services either indefinitely suspended or permanently closed.
So much has felt out of our individual control during the pandemic, and the fluctuating nature of restrictions and the struggle to access support has made the lives of people with dementia and their families even harder than they might otherwise have been. Potentially the pandemic has accelerated the progression of many people’s dementia too.
Choice and control are so important to our sense of who we are, and how we feel about ourselves and our lives as adults. When a person’s brain is changing due to dementia, choice and control become even more important.
So how can we help a person with dementia to be more independent, and have a greater sense of choice and control?
Your go-to ‘quick win’ – Environmental changes
It might sound odd to advocate changing something we might assume is one of the most familiar things for a person with dementia, but environmental changes can make a huge difference. Even a familiar home environment isn’t necessarily a well-functioning environment as a person’s brain changes due to their dementia.
I often cite this example from Hollywood, as documented in my blog ‘Bothered and bewildered by the portrayal of dementia’ to highlight how some simple environmental changes could have helped a person with dementia:
“My biggest gripe against the Oscar-winning Still Alice was the total omission of any examples that showed how Alice and her family could have lived better with simple environmental modifications. For example, signage that would have assisted Alice to get to the toilet in time in her holiday home.”
I would also recommend reading Wendy Mitchell’s book, ‘Somebody I Used to Know’ to understand how Wendy has changed her environment to help her to live as well as possible with her dementia.
However, like all things related to supporting a person with dementia, there is no rule book that works for everyone and you need to work side-by-side with the person to evaluate their environment together and implement any changes you both think may help. And remember: If an environmental change makes things more confusing or uncomfortable for the person don’t stick with it, even if dementia environment experts recommend it. Everyone experiences their dementia differently so be guided by the person.
Evaluating the environment of a person with dementia
I’ve recently become an Associate Trainer for 3SpiritUK and have been delivering their Tier 2 Dementia Training Programme. In this we cover some fantastic environmental principles that can support anyone, be they professionals (I’m training NHS staff) or family members, to make the environment of a person with dementia more helpful for the person.
In the training we champion The King’s Fund ‘OWL FM’ principles. OWL FM is an acronym that stands for:
It’s a simple, snappy acronym, and by thinking ‘OWL FM’ professionals and families have five useful prompts to guide evaluating and modifying (if needed) the home of a person with dementia.
Breaking down the OWL FM principles
If you’re evaluating the home of a person with dementia with them, what would you be looking for within the five OWL FM principles?
- What are the clues in the room to help the person orientate themselves?
- What in this environment is telling the person what it’s for? IE: Is the room a place for artwork or other hobbies? Is it where the person prepares or eats food? It is a room where the person washes or uses the toilet?
- Ask the person if it’s clear to them how they orientate themselves. Do some simple tasks together to see if the person can orientate well (or not) in each room.
- What can you do to help a person find their way?
- Does the person have any signs or directions? If not do they need some, and if yes are they clear enough?
- Some people can understand clues along the way, others can’t. Some people can use signs, others can’t. Find what works for the person by working side-by-side with them – show them different options, experiment with ideas.
- Think about positioning furniture and even making rooms more open-plan if this is possible.
- Think about lighting, especially in the darker times of the year – IE: A light on near the toilet. Use timers or sensors to ensure lights are on when they are needed.
- Can the person recognise what is around them? Do we need to turn a light on? Is there colour contrast?
- Clear the environment. Less clutter can help a person to find small items on tables and worktops, like where their glasses have been put.
- White light switches/plugs against a white wall will just blend in, as will items in an all-white bathroom. Highlight switches/plugs/toilet seats and grab rails with colour (red).
- If the person is living in a home they’ve lived in for many years, you may be tempted to skip this step. However, remember that a person’s dementia can take them back to a much earlier point in their life (IE: their childhood home) and as a result familiarity for some people may wain as their dementia progresses.
- Familiarity is important for identity affirmation – it can help the person to remember who they are, and it helps them to function and do the things they enjoy.
- Familiarity can be helped by doing life story work, and having objects of reference or through activities, which brings us onto…
- Make sure the person has a space, inside/outside or both that works for them to enjoy their hobbies or interests or try new activities. Yes, you may need to set things up for a person in some instances, but leave things out for them to enjoy independent creative pursuits too (you may need to remind/encourage the person with this).
- Activities need to be accessible and understandable, so anything you do with the person needs to be at their pace, with the steps needed to complete something broken down, and with the prompts/support that the person needs in that moment.
Your environmental checklist
- Make your New Year’s resolution to try and evaluate the environment of a person you support/love who is living with dementia. As already mentioned, do it with the person and be guided by them. You may need to do this over a few days/visits in order for it not to be overwhelming.
- Make any changes you both feel may help incrementally. Try things individually to see if they work, don’t just overhaul an entire home in one weekend!
- Don’t be afraid to introduce technology if the person is willing to try it and it can be afforded. Remember though – many environmental changes are inexpensive and can be achieved with some simple DIY (IE: Homemade signage, removing rugs/mirrors, covering reflective surfaces), so you don’t need a lot of money to begin to make an environment more helpful for a person with dementia.
- Continually refine as needed. Environmental changes, like life story work, don’t have an end-point. As the person’s dementia changes, you may find their environment needs modifying again – some previous modifications may no longer be relevant and new changes may be needed.
Thank you for all your support in 2021. Until 2022…