Navigating the world when living with dementia – it’s not always about memory

It’s a struggle when you don’t understand what they are experiencing

Over time many family members struggle to communicate with their loved ones who have dementia. I have cared with people living with different types of dementia and their families for 30 years and, through research together we have explored ways in which we can communicate and reconnect with the person. We firstly need to understand how they are experiencing their world as their dementia progresses.

Did you know that many people have difficulty navigating their world because their eyesight changes?

Not just what they see, but how they see may alter – we call this visuo-spatial perceptual difficulties (I’ll try and avoid a lot of the difficult to pronounce terms!). So, for instance, a person may be unable to judge the distance of objects to their body, such as when we are handing them a cup of tea, or helping them with cleaning their teeth.

Even parts of their body may seem further away or nearer than they actually are. This can pose real difficulties when helping care with the person, (I always say care with and not for – it’s a partnership and not a power struggle), but we can adapt our care when we know this. We have to be like Sherlock Holmes; curious and try and work out what is going on and how the person is perceiving their world.

Knowing their specific dementia diagnosis may help

such as knowing a type of dementia that can affect vision before the person may experience other difficulties – this is called Posterior Cortical Atrophy and can be associated with Alzheimer’s disease. Its dependent on where the damage occurs and in this instance it’s at the back of the brain (hence the term Posterior). The person may struggle to work out the depth of stairs and the foreground and background of a view may become muddled, they may see a plate but not the food on the plate and they may even know the food is there, but not see it – imagine that? how puzzling!

The world can become a very frightening place for the person and this is why people can show signs of frustration, agitation and in some cases aggression. We need to ask ourselves, what would we do if we couldn’t see as we once did? if we were scared, losing control of our lives, experiencing the world differently from before? How would we react? People who have dementia are often living in a state of heightened fear and as our brain’s major function is to keep us safe how might this affect how we behave?

So, if you felt like you were losing control of your life, your ability to make judgements, decisions, struggle with vision and possibly hearing, you might withdraw, hide away, shield yourself and give up, or you might fight. You have heard of fight, fright or freeze?!

When people have dementia, they may be unable to communicate their needs or understand what is being said to them – this too can be very frightening. The first thing we need to do is help the person feel safe. Find out more ways in which you can help the person in my book Finding the Light in Dementia

In my book and blogs you will learn many ways in which you can help reduce a person’s fear and help them feel safe, by understanding how they experience their day to day lives, I look forward to sharing my stories and experience with you–stay posted for more insights.

How can Live-in Care support people with Dementia?

As Dr Jane Mullins explains so eloquently, navigating the world when living with dementia is a multifaceted challenge that goes beyond just memory issues. It’s about ensuring safety, maintaining a quality of life, and preserving dignity. While medical treatments and therapies play vital roles, the environment in which a person with dementia lives can profoundly impact their well-being.

This is where live-in care can make a significant difference. Live-in care provides personalised, one-on-one support in the comfort and familiarity of one’s own home. This not only helps maintain routines and independence but also offers a sense of stability and security that is crucial for those living with dementia.
Choosing live-in care means that family members can have peace of mind knowing their loved ones are receiving the best possible care in a place they know and love. It ensures that the emotional, physical, and psychological needs of the person with dementia are met with compassion and expertise.

Conclusion

Living with dementia does not always have to mean losing one’s independence or quality of life.
With the right support, it’s possible to navigate the world with dignity and grace, ensuring every day is lived to its fullest.