People with dementia are frightened. They feel increasingly isolated and alone. None of us can fully comprehend what they go through at a mental level.
As family members, we too feel frightened — frightened at the thought of losing a much-loved family member or a lifelong soul-mate. There are also the conflicted emotions of guilt and anxiety as we struggle to adapt to this new situation.
At first, a diagnosis of dementia into the family brings a whole load of uncertainty and fear. Caring for my mother with Alzheimer’s disease at home taught me this and, to a high degree, justified it.
I have, however, also learned that, with a shift in mindset, there is still a life to be led. Even after a dementia diagnosis, there are still connections to be made and relationships (albeit changed) to be enjoyed.
Understanding what life is like for a person with a diagnosis of dementia helps you become more tolerant, loving, and understanding — something that benefits everyone in the family.
To this end, I have put together a list of the 5 considerations that will help you, when you love someone with dementia. Keeping these 5 things in mind will help you if your partner, parent, or other family member has dementia.
1. People with dementia can retain ability — but they need our help.
People living at home with dementia often suffer from “excess disabilities” — a term that refers to the loss of ability caused by something other than the disease itself. What does this mean? That we can do too much for them.
On receiving a new diagnosis of dementia into the family, often, as family members, we immediately start to do everything on the person’s behalf. This comes from a desire to eliminate the risk of failure on their part. Although well-meaning, when done early in the disease trajectory this often leads to increased levels of learned helplessness, loss of sense of self and reduced quality of life.
However, if the person is encouraged to stay active and involved as part of the family for as long as possible, this will help them to retain skills and stay connected. The more they are allowed to do for themselves, the better chance they will have of keeping and building on remaining abilities.
This will help them to maintain feelings of self-esteem, belonging and worthiness while also helping to preserve some form of family “continuity” at home. In the face of the biographical disruption that comes with any progressive disease, holding on to the small things can help keep life as normal as possible.
2. They still feel emotions such as joy and happiness.
Everyone’s experience with dementia is unique.
However, in terms of disease pathology, research shows that in people with dementia, the frontal lobes responsible for personality and emotions are often still relatively intact until the advanced stage of the condition. Aesthetic preferences have also been shown to remain constant; as does musical likes and dislikes, abilities and memories as seen here.
So, when you feel like giving up, find a way to tap into what is still there. The things your loved one has always enjoyed are hidden — but still in there somewhere.
3. They don’t like change.
People with dementia don’t like change. Unfamiliar environments and too many alterations in their surroundings severely challenge someone who is already having problems with recall. Working things out and trying to remember things are both more difficult when the environment shifts often.
Any change carried out at home should primarily be for ensuring safety and security. Creating a living environment that is stress and clutter-free, as well as helping to build on remaining ability, will also be of use.
4. They are highly sensitive to their physical and social environments.
Many of the symptoms of dementia are subjective. One common recurring theme is this fear response to an overly stimulating environment. In general, people with dementia can’t cope with loud noises, bright lights, or excessive external stimuli.
A bright light or a cold breeze from an open window may cause discomfort. The person with dementia may not necessarily be able to tell you what the problem is — the only indication to you that something is wrong is their agitation. But by simply fixing the problem, the issue can be resolved.
If you care for someone with dementia and they start to become agitated, look around the room for things that might be overstimulating to them. It is one problem, at least, that has an easy fix.
5. They benefit from the familiarity of situation, place or action.
Anything that is a reminder of the past is of value, whether the home or a previous role, occupation, or hobby.
Ordinary, taken-for-granted tasks can become extraordinary as they help the person continue to attach to their sense of identity, as well as to nurture a shared life as a family.
Remembering past hobbies with your loved one is a great way to positively reinforce their sense of self.
In the mild stage of dementia, I began acting as a family carer for my mother, a retired nurse. Carrying out nursing tasks together (such as bed-making) worked two-fold. Firstly, it helped her to resurrect happy memories of working in the hospital while acting as a reminder of past professional status. Secondly, it offered the opportunity to enjoy “us” moments, providing a welcome refuge from the uncertainty of the disease.
Picking Up Where your Loved One Left Off
People talk of the burden of dementia caregiving, and yes, it is not without hardship. It can present challenges, but it can also provide moments of hope and contentment.
When you really take the time to look at life through their eyes, you have to conclude that there is only one burden in dementia — theirs.
And, if, you can look beyond the dementia label, applying the love and compassion you have always felt for your loved one, hopefully, you can find and connect at a halfway meeting ground.