A sensory journey

In everyday life we can often take being able to see, hear, smell, taste and touch for granted. Senses give context to the mundane, stir our emotions, affect our body language and have the power to make the ordinary, extraordinary.

Many of us will spend much of our disposable income on making our homes and our lives as appealing for our senses as possible, so it is obvious that applying that same focus to the environments and lives of people with dementia can make a huge difference to the quality and richness they find in each day.

Bland, sterile, faceless environments do not benefit people with dementia. From contrasting colours to calming music or voices, aromas that stir fond memories, favourite foods, and compassionate reassurance to alleviate anger or remove fear, the opportunities to enliven the senses to bring positive therapeutic benefits are extensive, and yet they are often not fully explored.

In some care homes sensory rooms have become very popular, not least because staff who were perhaps sceptical previously see the clear benefits on their residents' moods, emotions and wellbeing. These rooms can have a wonderfully calming effect on people who are experiencing agitation due to their dementia, and are as valuable as other standalone therapies like music (that I wrote about here) art, gardening or exercise.

Soft, possibly coloured lighting, tactile fabrics, comfy chairs, delicate aromas, relaxing sounds and, crucially, the opportunity to put the person with dementia in charge of what they do by making the room safe for them to move around and try different sensations, is a very enriching activity, particularly when enjoyed with loved ones, offering the chance for renewed family interaction and exploration.

I have visited care homes where they have interpreted the idea of sensory areas in many different ways, for example through having daylight rooms, beach rooms (complete with sand and gentle wave sounds), and sensory gardens with waterfalls and pathways that have been planted up with tactile plants and scented flowers. Conversely I have also walked down many corridors that offer no stimulation, with rooms leading off of them that are virtually identical, and people sat blankly staring into the distance while others are agitated or wandering around a seemingly never ending space that offers them nothing for their wellbeing. The difference in these atmospheres is what separates person-centred care from conveyor-belt care.

For our part, we tried to make my dad’s room a place of sensory delight. For dad, a particularly successful therapy was that of touch. Having been an active farmer all his life, his hands were desperate to be busy again, and without something to hold he was at a loss with that to do with them. Life-like miniature versions of farm animals were dad’s salvation; their soft faux-fur was perfect to stroke, and he could hold one under each arm to cuddle.

This approach was successful because not only did it solve the idle hands problem that dad was experiencing, it solved it by tapping into the touch sensation to calm and relax him. As in all things dementia related, personalisation is the key to therapeutic interventions, and this becomes even more important when the person with dementia has limited or completely non-existent use of one of more of their senses.

Dementia can create huge isolation by its very nature of putting the person with it into their own world that none of us can truly be a part of, but when someone cannot see or hear what is happening to them, who the people are around them and why they are being offered or given particular care, the world is an altogether more frightening place.

A lot of dementia training focuses on explanation and demonstration, not taking into account what happens if the person with dementia cannot benefit from that. If someone cannot see that a carer is trying to feed them, or cannot hear what the meal is and that it is now time to eat, they are likely to panic. If you were blindfolded, given ear plugs and then had someone jabbing at you with a spoon you would probably panic too. Therefore assessing someone’s sensory abilities, whether that be through checking their hearing, eyesight, ability to respond to taste (sometimes tastes need to be stronger as taste buds become duller) and smell (my father could not remember how to blow his nose for the last few years of his life, meaning that he had a permanently blocked nose and sneezed daily) is extremely important so that when it comes to touch, this is appropriate, expected and welcomed.

Touch is what ultimately brings true compassion, and can, when part of person-centred care, compensate for the deterioration of any of the other senses. Touch reminds us of how we are nurtured from birth, and for someone with dementia, those memories of being protected and loved are very empowering. Dementia is a hard road to travel, but making it a more sensory journey nurtures the person, and if there is one thing we would all like to be able to do for a loved one with dementia it would be to make life just that little bit easier for them.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Food for thought

One of the things many of us take for granted in our busy lives is the enjoyment of food. It is vital to fuel our bodies for the physical and mental exertions they face, and it is one of life’s great pleasures, but what happens if you forget about the importance of food?

Many people living with dementia develop problems with eating which are hugely distressing both for the person concerned and their carers and loved ones. Those living with dementia can lose the sensation of hunger or thirst, or conversely, overeat because they cannot distinguish when they are full. They can clamp their mouth shut, making feeding very difficult, or spit out some or all of what they are given.

As dementia progresses, those living with it can increasingly lose their ability to smell and taste, and some people then only respond well to strong flavours and aromas (and I don’t mean overcooked sprouts!). Likes and dislikes can also change frequently, and those caring for someone with dementia need to be both innovative and flexible with food, and the choices they can offer someone developing problems at mealtimes.

The colour and size of plates, style of cutlery, patterns on table cloths, and distractions in the room can all affect a person’s desire to eat. For some people portion size is the key problem, with piled up plates appearing to be an insurmountable task, whilst for others it is simply about deciphering what they would like to eat when they cannot necessarily accurately tell you.

The single most important point, however, is that like with every other aspect of dementia, every person living with it is different. What works for one person won’t work for someone else, and what works on one day can spectacularly fail the next. What I can pretty much guarantee, however, is that the higher the quality of the ingredients and the more skill with which they are prepared and presented, the greater the chance that someone living with dementia will be persuaded to eat the meals so vital to their quality of their life. It all boils down to valuing the person living with dementia and giving them something that a person without cognitive impairment would be happy to eat.

We were lucky with my dad, in the 19 years he battled dementia he generally had the appetite a horse would be proud of, only going off his food when he was suffering from an infection. He never forgot how to eat, even if he lost the ability to co-ordinate cutlery (resulting on one occasion in him using his fingers to feed himself ice cream), and mealtimes were generally happy occasions. As his dementia progressed he eventually could no longer feed himself and he relied on his carers and his family at every mealtime, and soon after that he could no longer drink for himself either, and so had to be assisted with that too, but he was a willing recipient and a joy to care for.

It is crucial for someone with dementia that they are given time when eating. Sadly care staff are often under huge pressure to get everyone fed as quickly as possible, rushing those who would otherwise eat more if given longer. Likewise the pressure on staff can result in not enough drinks being given, simply because again they do not have the time to sit with each resident while they either drink themselves or are assisted. The way in which some people are fed is also very alarming, and of course in hospitals, many people are not fed at all!

My father was a man who adored food; not in an unhealthy, developing obesity sense, he just loved good, honest, home-cooked food, and as a farmer and keen gardener he knew the value of fresh produce and organic production methods. It was, therefore, a particularly cruel twist of fate when he developed dysphagia, otherwise known as a swallowing problem.

Over the last four years of his life this became worse and worse, until in the last few weeks there was a 50/50 chance of anything taken by mouth going into either his stomach or his lungs, the latter resulting in pneumonia. He battled valiantly to eat even the most e-number laden, gluey and utterly revolting hospital food, and when he finally moved into his new nursing home, still very poorly, he briefly showed renewed enthusiasm for life with food that was homemade, lightly pureed and both looked and smelt really appetising, a real revelation in how to produce food that is perfect for someone with dysphagia.

If dad’s last care home could produce meals of such high quality, then there is no reason why all homes cannot do the same, many already do. Likewise, hospitals should be forced to fundamentally overhaul the food that they are feeding to those in their care. I was reliably informed by other patients that the standard meals were pretty disgusting, and certainly the pureed food given to my father most people wouldn’t feed to a dog (and the dog would probably refuse it anyway!).

Nutrition is not given a high enough standing in our society of fast food, ready meals, and the chemical laden products being ingested by huge swathes of the population, contributing to the many health problems people now face. It is even fed to the most vulnerable people in hospital at the very time when they need to be getting better, not worse.

For all those living with dementia, and everyone who wants to prevent developing it, a healthy, balanced diet is vital, and it is something I will post about again in more detail at a later date.

 Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook