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…