Having dementia should never change the way someone is viewed or respected, yet sadly it often does. Many people are unable to see beyond the disease to the person within, and as a result, it is frequently considered acceptable to treat someone with dementia in a way that you never would another adult of the same age who is not living with dementia.
During the years my father spent in care homes I saw practices and heard remarks that I found highly disrespectful and degrading. Very rarely were they ever directed at my father in our presence, but when we were not there you can imagine how conversations may have developed around him, and the impact that this had in his mind and his sense of who he was.
Issues around how we respect people with dementia are deeply rooted within personalisation practices encompassing an appreciation of the person’s life, choices, style and beliefs when they could express them freely. A simple example of this comes in how people living with dementia are sometimes dressed. When they appear in clothes that you know they would never be wearing if they were not in a care home with dementia, and even more so when those clothes are dirty or wet, it is disrespectful to the person, and a failing on the most basic level to appreciate the life that they had before dementia and the choices that they would make if they were able to.
In some cases these were clearly clothes that families had provided, and were very similar to what they themselves would visit in; a classic case of the younger generations imposing their style onto their loved one without thinking about what their loved one would want for themselves. Excuses are made about having clothing that is suitable for rigorous washing, and issues of comfort are also sited, but comfort is always achievable whilst maintaining dignity. Men in their 70’s and 80’s never grew up in a culture of tracksuit bottoms and t-shirts, so to find them wandering the corridors in such attire, often dirty and stained is, for me, disrespectful to the person and their heritage.
In their younger day you would most likely have found them in a collared shirt and tailored trousers; even my father, who never worked in an office and lived an outdoor life as a farmer, wore a collared shirt and tailored trousers. Those were dad’s choices when he was able to make them, so when I was making them my father was never seen in anything other than smart, roomy, comfortable chinos and a collared shirt; very washable, hard-wearing, practical and dignified.
Respect for the person and a steadfast maintenance of their dignity should never end when clothes are removed either. I have seen residents, male and female, wheeled down corridors from the shower room to their bedrooms, poorly wrapped in towels that leave them exposed, without anything to prevent them from passing urine or faeces as they are moved in full view of visitors, residents and staff. Indeed some staff members even found this amusing.
Other examples of lacking respect for people with dementia can come from how the aids they need, as a result of the physical decline associated with dementia, are referred to. The times I heard incontinence pads described as ‘nappies’ – perfectly fine if an 80 year old was 8 months old, but they are not. A man of 80 does not need his nappy changing, and to tell him he does, assuming that because of his dementia he knows nothing of what you are saying, is to assume far too much.
People with dementia have sensitivities, understanding that they cannot articulate, feelings, desires, and an inner voice that is most likely screaming to be heard. Using words attributable to babies and children is both disrespectful and also confusing to the person with dementia. They may well remember what a nappy is and wonder, as they look down at their fully grown body, why anyone would want to change a nappy on them.
There is a massive temptation, because many of the symptoms of dementia resemble a person regressing to often child-like behaviour or mannerisms, to treat an adult living with dementia as if they are now a baby again. However, just because someone calls for their mother does not make them a toddler, nor does the fact that they have incontinence or need help to be fed. Those physical symptoms are not who the person is, and they do not represent their thoughts or feelings.
Dementia takes so much from a person, but anyone who treats an adult like a child takes far more.
Until next time…