Understanding & Overcoming the Impact of Social Distancing on Caregiving Relationships in Dementia Care

Luke Tanner Meaningful care matters trainer and consultant

Luke, trainer and consultant at Meaningful Care Matters, who is also a body psychotherapist and author of “Embracing Touch in Dementia Care. A Person-Centred Approach to Touch and Relationships”, explores the impact of social distancing in dementia care. He outlines some of the key challenges carers currently face in not being able to provide physical, meaningful contact, and provide innovative examples on how this can be overcome.

Social distancing is the first nationwide no touch policy we have ever had. Those of us fortunate enough to be living with close friends, partners or family will continue to be close to each other, in one way or another, as we get on with our day to day lives as best we can. If we reflect on these relationships in terms of touch, being close to someone is likely to involve all sorts of ways of being in touch. Depending on the relationship, it can involve bumping into or brushing past another, sitting or standing shoulder to shoulder, shaking hands, doing high fives, fist bumps, play fighting, tickling, holding a hand, putting our arm round someone, leaning on one another, hugging, cuddling, dancing, kissing, and caressing.

These ways of being in touch can be such a normal part of our everyday lives, it can be easy to overlook the role they play in sustaining our self esteem and general wellbeing. These forms of affectionate, comforting, playful or loving touch can meet our basic needs for comfort, attachment, love and belonging. They can foster a sense of safety and security and help us feel that we matter. Offering these forms of touch to another can be just as important as receiving them, giving us a sense of purpose and self worth by fulfilling our need to love, care and support another.

How we are in touch shapes not only how we feel about ourselves, but also each other. It’s a very primitive form of communication that we all understand. When doing your exercise outdoors, you may have noticed your awareness of how people are touching one another is heightened. When we see two people holding hands or walking close enough to bump into each other as they walk through the park, we are likely to see them as close friends or partners who live together, rather than two people  flouting the social distancing rules. Touch and closeness conveys very powerful messages about our relationship to one another. We tend to keep the people we like closest to us and the people we don’t know or dislike further away. 

The media is currently reporting some very disturbing figures about another form of touch. The violent, aggressive, hostile touch that constitutes domestic abuse. These forms of touch are particularly shocking because they are occurring in places and relationships that many of us associate with safety; our homes and close relationships. The fact that some people are tormented and abused in the very relationships most of us take refuge in when in need of comfort and support is extremely disturbing. Reports of how pervasive this kind of aggressive and hostile touch is in domestic settings are very alarming and indicate that far more needs to be done to tackle this problem. 

There is also, however, another kind of suffering that social distancing has placed on people, the experience of no touch at all. Many people who live alone or in care settings are separated from their closest friends and family and being deprived of meaningful physical contact. This experience of touch is not so likely to get the headlines, but can over time erode someone’s sense of self worth and wellbeing. No one offering their hand; no one to lean on, brush past or sit beside; no affectionate embaces; no one reaching out when feeling down or distressed. How might this impact on someone’s sense of belonging, security and self-worth? Being able to rationalise the experience of social distancing and recognise it as a response to a pandemic rather than a personal snub, will of course reduce the sense of rejection. The capacity to rationalise and contextualise people’s change in behaviour should not however be taken for granted. Many people experiencing a cognitive impairment and living with short term memory loss cannot rely on this capacity. In fact, such an impairment can mean that someone is even more reliant upon their experience of touch and other non-verbal forms of communication to make sense of their relationships and assess other people’s emotions and intentions. For some, social distancing (the wide berths, avoidance of social touch, face masks and gloves) will be experienced as rejecting and stigmatising, conveying “cold” and distant relationships. 

There are thousands of people experiencing cognitive impairments who are living alone or in residential care settings and needing support. Contact with care workers may be the only face to face contact they have with the outside world. Those carers must now also keep their distance and refrain from engaging in any non-necessary touch. Many of these key workers will now be doing something which will feel very counter intuitive; be more caring by maintaining a distance. Many will find it very difficult to suppress their natural impulse to comfort, reassure or connect with touch. Empathy, care and touch, after all, are intimately intertwined. 

Reflecting on the role of touch in care may seem like it’s dwelling on minor details in the midst of a major crisis. However, social distancing places a profound barrier between caregiver and receiver because comforting touch and closeness plays such a major role in conveying a caring intent, and building the trust and affection key to consensual caregiving. When care is delivered without a sense of trust, empathy or affection, the people receiving care will end up feeling more like problems to be dealt with or tasks to be done rather than people to be met and appreciated. In dementia care, where touch and non-verbal communication plays such a significant role in shaping people’s sense of relationships, this barrier threatens to destroy trust and affection, compromising consent. 

From the perspective of someone living with dementia, a carer’s attempt to assist in personal care or a daily living task may look more like being taken in for surgery by a stranger for some unknown operation. In concealing people’s facial expressions, face masks will severely undermine the person’s capacity to sense the carer’s feeling towards them, making it more difficult to assess their intentions. In these stressful situations, full of uncertainty, it can matter a lot more how someone is (their body language and tone of voice) than what they actually say. 

Recognising the profound implications of social distancing, professional dementia care workers in Butterfly Care Homes in Canada and the UK are trying to overcome this barrier in some very thoughtful and creative ways, from exaggerating body language (so it speaks more loudly) to using objects and imagery to bring more comfort and joy. 

The examples below aim to inspire other carers struggling to overcome the challenges posed by social distancing measures. The approaches help to demonstrate the multiplicity of ways that we can make and sustain meaningful connections:

  • Set-up an uplifting and comforting scene by using familiar music that creates a sense of safety, pleasure or joy. Also, dance or sing your way too someone when you approach.
  • Use props to take attention away from the mask e.g. wearing a silly hat, mickey mouse ears, a feather, or bring comforting objects and imagery like flowers, trees, rainbows, childrens drawings, or soft toys to people.
  • Stick a fun, informal photo/portrait of yourself on your chest so people can get a sense of who you are beyond the mask and/or uniform. 
  • Exaggerate hand gestures. In addition to showing explanations, they can also convey intentions and levels of trust. For example, gestures towards your heart can indicate a heartfelt intent, and bringing your hands together can indicate a coming together, connection or resolution. Open handed gestures are softer and safer than closed fisted gestures or finger pointing. 
  • Sustain your eye contact for far longer than normal and let them twinkle and sparkle. Sustained eye contact is a powerful way to convey safety and trust.
  • Smile with the wrinkles around your eyes, those crow’s feet mirror the smile happening under that mask! 
  • Slow down, rushing around signifies alarm and distress to someone who is relying on your body language to make sense of their situation.
  • Sit down for a moment before and/or after you do any task – sitting down indicates that you have come to be with the person rather than just get something done. It shows that you care about the person more than the thing you need to get done.
  • Remember that your breathing is a form of communication. Whilst we tend to breathe short and shallow breaths when we are stressed, we tend to breath slower and more deeply when we feel relaxed and at ease. Slower breaths can convey comfort and ease to others. 

Highlighting the implications of social distancing for people living in dementia care and suggesting some ways of overcoming them, should not be taken as an instruction to carers to do more work! Carers are working hard enough at the moment in extremely challenging circumstances. Right now, many people working in dementia care will feel particularly stressed and overwhelmed. Furthermore, by working tirelessly to sustain a service, they are unlikely to have had the time to grieve for people they may have lost as a result of COVID-19. 

Reflecting on the role of our body language actually shows how powerful each one of us already are. Our simple gestures, from our breathing to our “smiley eyes”, can shape how another person feels. Being more aware of our body language actually means slowing down and doing a little less, so that we can communicate more effectively in a language that many people living with dementia are highly responsive to. Expressing this compassionate body language and playfulness can actually generate more comfort, ease, safety and joy within carers, as well as recipients of care. One of the joys of working in dementia care is the fact that heartfelt playfulness plays such an important role in caregiving. Many carers are showing us just how essential this heartfelt playfulness is in times of crisis. 

We hope you found Luke’s advice helpful. If you would like to know more about how we are supporting care providers during these unprecedented times, please don’t hesitate to get in touch with our friendly team.

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