Humanity in care - The role of touch

One of the most controversial elements of care provision is touch. It has a discomfort associated with it for many professionals, and even family members can have deep reservations about touch. It can be associated with abuse, both by ignoring someone's need for a comforting touch or the more commonly made association of inappropriate touch. It is also a topic that us famously reserved Brits don't really like talking about.

Touching another person can happen in a variety of situations and for a multitude of different purposes. It can be the basic things, like a clasp of the hand when you greet someone, a hug, a kiss on the cheek, ruffling hair or brushing against an arm. It can be touch that is necessary to help a person with something, like personal care or eating and drinking. Touch can be used to support, comfort or reassure, but it can also cause alarm or anxiety.

Touch has an important role to play in dementia care for the majority of people who are living with dementia. Understanding the individual preferences of a person around touch is vital to ensure that you don't dismiss a person who seeks comfort, or distress a person who feels that touching them is an invasion of their personal space.

Against this backdrop, why do we have such a deeply uneasy relationship with touch, given that it is a natural part of life from the moment we are born?

For professionals, a lot of the issues around touch are about what is appropriate - there is an underlying fear that any intervention must be proportional for a particular situation and justifiable to anyone who may observe and question. Yes, touch is sometimes associated with inappropriate behaviour and criminal acts, but those incidents are few in comparison to the vast majority of instances where touch is giving support, comfort and putting humanity into care.

Occasionally, issues around touch can be rooted in fear about older people and advanced dementia. A good example comes from a particular interaction between my dad and an out-of-hours doctor. It was late on a Saturday evening when the doctor called to see my dad for a suspected chest infection. During the necessary examination, the doctor refused to touch my dad, instead issuing instructions to remove clothing and position dad in a certain way. I was appalled - the lack of warmth in that doctor's approach betrayed everything that was wrong with his bedside manner.

Fear of touch can also come from concerns about protocols. I remember seeing care workers walking past and ignoring a lady who was crying out to see her husband. When I asked why they were not comforting her, they said they weren't allowed to. I was horrified and couldn’t just walk on by, so I stopped and put my arm around the lady. We sat there for a while, she was crying, I was trying to be soothing. I can't prove my intervention helped, but I can say that if I had been that lady I would have felt considerably less alone as a result of a comforting touch.

Sitting holding my dad's hand was a standard element of all the hours we spent together, as was stroking his head or his arms. However, not all family members feel comfortable about touching their relatives in this way. Visiting a loved one with dementia can bring with it a raft of emotions, and as much as we don't like to talk about some of the more uncomfortable aspects, for some people this can include feelings of revulsion, of not wanting to become 'dirty' or 'catch' something. In short, not touching can be method of protection for some individuals.

At the other end of the scale are family carers, who find themselves thrown into an unfamiliar role that is inevitably going to involve a lot of touch. Having to cope with an increasing need from their loved one for help with personal care can be hugely difficult. Any care that involves touching intimate areas, such as changing incontinence pads or bathing, can be especially problematic, and even more so when the relationship is between a child and a parent, and where the two people involved are of the opposite sex.

So how do we become more comfortable about touch, and the vital role it plays in caring for people with dementia? 

A significant part of the answer to this lies within ourselves. Confronting our own reservations about touch is the first step towards feeling more comfortable about it. Reservations in relation to touching people with dementia can often be rooted in stigma - one of the most astonishing things I ever heard was the idea that somehow you might 'catch' dementia from touching someone who is living with it. Perhaps that is what that out-of-hours doctor was afraid of.

As a family member visiting a relative who is living with dementia, engaging in practical activities that may naturally lead to an element of touch - in terms of guiding or assisting the person with dementia - can help to make touch feel like the normal part of life that it is. If you are a family carer having to undertake increasingly personal touch-related care, knowing that you are doing things in the right way (for example techniques for moving and handling, washing and dressing etc) can often help to reassure the carer. That guidance could come from a district nurse or other qualified health or social care professional.

For professionals, I think touch will inevitably remain a difficult area. Some people can naturally incorporate touch into their care provision, and so long as that is done in a way that the individual receiving care is comfortable with, then it is a win-win for all. Learning to gauge that comfort level takes a degree of skill and experience, and guidance from other members of the team.

Most importantly though, it is about communication with the person you are caring for and observation of their needs and reactions. It's about being adaptable, and not assuming that what was ok yesterday is ok today or tomorrow. It is also about establishing relationships through continuity of care and reflecting on what is going well and what could be done better. 

In the end, touch is a human reaction, and hugely associated with our emotions. It is part of who we are, and as such it has to be part of the care we provide.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

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