How often in dementia care do professionals stop to think about what a person can do, rather than what they cannot? So much focus is placed on need and incapacity, drumming into care providers, clinicians, families and indeed those living with dementia, what this disease takes away from a person, often extinguishing in the process any hope of living well with dementia.
Whilst the progression of dementia brings significant, irreversible changes that can be painful and upsetting for those living with it, their families and carers, it is often the case that someone with dementia can still do things that they enjoy but perhaps in a different way. More open-minded, innovative thinking can increase the quality of life for someone living with dementia immeasurably, but it needs families, care-providers and other professionals to see beyond the disease to the person within.
Eating is a common area where independence is often lost completely and unnecessarily. During my father’s 9 years in 3 different care homes, he went from being someone able to feed himself a huge selection of foods independently, to someone who needed to have all of his food pureed and spooned into him and all of his drinks thickened and spooned into him. During this transition, finger foods helped him to feed himself, and even during the advanced stages of his dementia, there were days when his mind was focused and his hands were active and strong enough to take the spoon, with assistance, and put it into his mouth, or hold the bowl or plate whilst he was fed. Supporting him to do this helped him to realise some of his potential in that moment, made the meal a more engaging experience for him, and demonstrated his desire to eat and live, a key factor to highlight to clinicians who felt that he had no quality of life and no desire to remain alive because he had dementia.
Communication is another area where incorrect assumptions are made about a person’s ability. Because society places such a huge emphasis on clear and concise dialogue, when someone with dementia can no longer hold a conversation, it is often felt that they do not have thoughts or feelings because they cannot express themselves in the conventional way. When my father could no longer speak more than half a dozen words, music and songs became his form of expression (as I wrote about here). Lyrics tumbled out, in the correct order and at the right time, showing how his mind was working and that his memories were still alive. Crucially, music also gave a window into his emotions, proving that you do not need to ask someone how they are feeling to find out this information. I have also seen how old films, TV programmes and reminiscence sessions with cards, pictures, objects, quotes and phrases can also trigger conversation from people who otherwise would not communicate.
Lack of concentration in someone with dementia can often be at the root of why so many care professionals give up on people living with dementia. If they cannot concentrate to eat, drink or talk, and many only want to pace the building constantly, it can be felt that they are simply beyond help. Not so: providing something to focus on, like a favourite possession from their past, can help to focus the person and improve their concentration.
Many people also believe that the hobbies someone used to enjoy before dementia become out of reach as their dementia progresses. However, with creative thinking and the help of innovative products where they are needed, you can transform the daily life of someone with dementia into an experience where therapy and pleasure go hand in hand. One of my father’s great passions was gardening, but sadly this was not encouraged at the nursing home where he spent most of his years in care. Even when the garden was finally landscaped into an area that was wheelchair friendly, residents generally only went outside if a family member took them (as I wrote about here), and activity was frowned upon. What a difference a few modified gardening tools, and attitudes, could have made.
Care providers need to become more aware, committed and forward thinking in how they approach the needs of people with dementia. Everyone is capable of something, and with the right support, encouragement and assistance, things can be achieved that exceed everyone’s expectations, including those of the person with dementia who may be feeling that they have lost purpose and ability, and are now deprived of activity in their life as a result. Many products that are produced to assist with tasks are heavily promoted within the disability market, of which dementia is not naturally positioned, but someone with dementia can often have physical problems that require additional assistance and, regardless of that, many products can have multiple uses when a creative brain and a holistic approach are deployed.
Often obstacles to someone with dementia being able to show what they can do are simply solved to enable positive interaction. For example, is the person sat comfortably and properly supported in a chair or wheelchair that is right for their build/posture etc? Are they dressed appropriately and at a comfortable temperature? Are they hungry or thirsty? Do they need the toilet or are they sat in a soiled pad? Is the environment free of other distractions? Is the person otherwise in good health and not suffering with an infection that can impair their ability to participate? Are they being communicated with in a manner that is appropriate for them? Answer these questions positively, and you can be assured that the person with dementia, however limited their abilities may appear, can join in something that they enjoy.
In many respects, the worlds of disability and especially disability or impairment in the young, are streets ahead of dementia care when it comes to demonstrating a 'can do' attitude. Yet thinking back to the lives our older generation had in their teens, twenties and thirties, many of them would have been up against great hardships and setbacks but powered through regardless with hard-work and dedication. Indeed, many veterans will say that wars were only won because those fighting abroad and those at home had a ‘can do’, will-to-win attitude, even against the odds. Keeping this spirit alive helps to keep our older generation, and especially those living with dementia, alive, engaged and leading enriched and meaningful lives. If our Paralympians can do it, it is not beyond the bounds of possibility in dementia care.
Until next time...
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