Beth Britton, who works with our Best Practice Health Team, writes about the importance of supporting a person’s independence when they are living with dementia.
MacIntyre’s DNA is a reminder to us all that independence should always be front and centre in our support for a person with a learning disability and/or autism.
We know that if a person develops dementia our mindset can sometimes shift – unintentionally - to doing more for the person, sometimes losing the spirit of ‘Being ambitious for ourselves and each other’. The Covid lockdowns, and the ways we had to change our practice through those times, have also contributed to a loss of focus on maximising a person’s independence which has been hard to move away from.
As kind and compassionate human beings we want to ensure a person feels safe as their cognition changes, but equally we want the person to feel in-control too – so how do we achieve both?
The value of autonomy
Control comes from having as much autonomy as possible, so supporting independence is vital. Developing dementia will mean a person’s abilities change, but this needs to trigger a continual evaluation process (that can be supported with documents including our Independence Tool, rather than an assumption that a person can’t do things for themselves.
Evaluation should lead us to modifying our approach and making changes (that are often small and incremental) to ensure that the person can still do as much for themselves as possible whilst feeling safe and supported. Read our eBook ‘Promoting Independence and Safety’ to further understand the synergy between these two aspects of a person’s life.
Making changes to support independence
There are many ways in which we can modify how and what we do to support a person more appropriately as their cognition changes. Regardless of a person’s diagnosis status or the stage of their dementia, we don’t need to wait to make changes which could include:
Adapting our communication
The way a person has communicated in the past might become more of a struggle as they develop dementia. We may need to think about additional/different communication tools; for example, a person may find seeing pictures or actual objects/items easier to understand than the words we are speaking. Don’t forget the power of making choices in a sensory way too – for example, tea and coffee smell very different, and a person may be able to make their choice of drink from the smell.
Keep in mind: Being able to communicate is key for independence, so we need to continually evaluate how the person is communicating and what we need to do to support them to communicate most effectively. Our ‘Dignity and Respect’ eBook has communication tips and lots of additional advice.
Evaluating the person’s living space
Being able to navigate around their home and participate in tasks of daily living that they’ve always enjoyed is important for maintaining a person’s independence, as well as their self-esteem and sense of worth. Experiment with making small changes to the person’s living space, being mindful of their needs and the needs of any housemates that they live with. Read our eBook ‘Dementia Friendly Environment’ for lots of ideas to try.
Supporting the person’s social and work life
Developing dementia should never mean that a person loses friends, is excluded from pursuing hobbies or activities that they enjoy, or is forced out of their workplace.
We may need to support friendships by helping peers to understand what’s happening to their friend’s brain and how they can help their friend. Explore how to do this by reading our eBook ‘Supporting Peers and Friends’ and sharing ‘Vince has Dementia’ with peers, friends and work colleagues.
We can help the person to continue to have a social life in their community, go to work, and enjoy hobbies and activities by adapting our support. This means thinking about how we communicate, modifying environments in Lifelong Learning or workplaces (this may be as simple as some signage, adaptations in the toilet or kitchen, and adding some colour contrast), making hobbies or activities accessible by breaking them down into smaller, simpler steps, and being patient, compassionate and kind. Consider supporting a person to attend one of our MacIntyre Memory Cafes.
- Resist the urge to step in and do everything for the person. Instead work side-by-side with them, maximising what the person can do and supporting them with anything that they are struggling with. This film from the Social Care Institute for Excellence (although focused on a care home), shows how a person’s independence can be supported and highlights some of the barriers that can occur around supporting independence.
- Evaluate and be flexible. For some people with dementia, their skills and abilities may fluctuate from hour to hour, day to day. This means we need to continually apply ‘fresh eyes’ to what they can do and be flexible in our approach. Don’t stifle the person’s chances of independence by assuming that because they can’t do something now they won’t be able to do it ever again (they may just need some modifications).
- Don’t be afraid to change something… even if it doesn’t work. Great dementia care is about creativity and trying different approaches. If something we change in the environment or our approach doesn’t work, we shouldn’t let that put us off from trying something else.
- If you have a professional role in care and support, promote a culture of independence through teamwork and clear communication within team meetings etc. Speak up if you feel the people you support aren’t being given opportunities to maximise their independence, and talk about any instances of support that you feel didn’t respect the person’s autonomy.
Get more support
Join the Health Team for the next Dementia Special Interest Group on 25 October 2022 to share your experiences and learn more about dementia. Everyone is welcome at our supportive, informative and interactive meetings.