This is a short guide to changes to be aware of when working, living or supporting someone living with dementia.
Most of us know someone who has been diagnosed with dementia. If you need to take on their care or learn how best to help or support them, it can feel overwhelming. As physiotherapists we often work with patients with dementia and have put this short article together as a resource for family, friends and carers.
Like all medical conditions, dementia normally starts with quite mild symptoms and then progresses. The needs of the person and their symptoms will change over time, and different types of dementia may progress in different ways.
There are many types of dementia, but the most common are:
- Alzheimer’s disease
- Vascular dementia
- Lewy body
- Young onset dementia
- Frontotemporal dementia.
You can also get dementia related to other health conditions such as, Parkinson’s Disease, alcoholism and Huntington’s Disease. To learn more about the different types, visit: www.dementiauk.com.
There are a number of things to be aware of when someone is living with dementia. These may help you understand and respond more helpfully to their experiences.
Dementia typically does not affect the quality of one’s vision, but how what we see is processed by the brain.
Items that are black or dark colours may be difficult to find, for example a black coat. Such colours may be perceived as a hole in a surface rather than an item. For example, a black mat on the floor might look like a hole and a person with dementia may be reluctant to step on it.
It can be difficult to see the edges of carpeted stairs, making it hard to distinguish individual steps. Steps with clear edges or marked edges can make stairs easier and safer to negotiate independently.
Also, patterned carpets or shiny surfaces can be disorientating and perceived as something else, such as marble floor looking like a swimming pool. It’s therefore important to think about colour, pattern and material when choosing clothing, flooring and wall colours.
Also consider the contrast between different things in the room to make navigating the room easier. Are the colours of the walls and the floor significantly different to make the person more confident in moving about? Are the switches either a different colour to the walls or do they have bright tape around them to make it easier to find them?
Dementia can cause different types of visual hallucinations which can cause panic attacks or anxiety, especially if they see a ‘person’ in their home or something they have a phobia about. To help with this, teach the person to look away or move away from the thing that is causing distress and check if it is still there when they return their gaze. This can help them understand what is and what is not real.
Physical movement & independence
It’s important that someone living with dementia is allowed to perform tasks for themselves for as long as possible. This will help maintain their physical ability, but also keep their sense of purpose. Remind them that if they are struggling with something they can ask for your help.
If you can see they’re frequently tripping or are falling more, it may be worth getting an assessment with a physiotherapist or occupational therapist. The therapist can advise on approaches and equipment that will allow them to continue to perform the task independently. This is preferable to giving them heavy support or performing the tasks for them.
It is important for people living with dementia to have connections with other people or their communities. A study reported that people living alone sought relationships, and that meetings of any duration, either planned or spontaneous, provided meaningful contact and made people feel safer and less lonely in their neighbourhood. Contact also helped maintain their ability to communicate with others. If they saw these people on a regular basis, they felt there was someone keeping an eye on them, someone who would raise alarms if they were suddenly absent.
People living with dementia also found that the social circle reduced after being diagnosed with dementia. This was due to lack of social awareness of what dementia means; a lack of acceptance of the condition; and a lack of compassion for those living with the disease. This resulted in people losing long-term friends, and also struggling to make new friendships.
There are pros and cons to people living with dementia staying alone while they are physically capable of doing so. Having someone in their home can help them remember important dates or appointments, ensure they turn off the cooker, help with tricky tasks like opening tight lids, or just provide general companionship and a sense of safety.
But living alone also gives a person the flexibility to do things at their own pace. If they are constantly being rushed or questioned, it can result in a feeling of failure. Living alone also ensures they maintain their independence and sense of empowerment for as long as possible. However, it can make them intolerant of other people coming into their space.
If you are considering getting a live-in help for someone living with dementia when they are no longer safe living alone, remember that this may cause anxiety and disorientation. It is also important that the helper understands the person, understands their type of dementia, and treats them with dignity, taking their lead on how they wish to be cared for.
Avoid carer burnout
If you’re caring for someone living with dementia, it’s important to have your own self-care strategies to maintain your energy levels, and to understand how and how much you can care for your loved one. It’s okay to get help from other family members or professional carers.
There are also dementia groups that the person living with dementia can attend to provide you with time to rest, do personal chores, and meet up with family or friends.
Further online resources:
Books that can help to understand more:
- What I Wish People Knew about Dementia from Someone Who Knows by Wendy Mitchell
- Talking Sense: Living with Sensory Changes and Dementia by Agnes Houston
Understanding how dementia progresses and what the person living with dementia is experiencing can help you connect, support and be more patient with them. But even if you do understand, caring for someone living with dementia can be hard and frustrating. You may also be grieving for the person they once were which can add to your stress and exhaustion.
Please, take advantage of the support that’s out there.