Responding to dementia – the most important thing

    Responding to dementia – the most important thing

    By Robin Thomson . Published 2021-04-08


    Author Robin Thomson talks about a seminar he has been involved in

    Each person’s experience of dementia is different. But there are common questions. What is the most helpful thing we can do for the person living with dementia? It’s easy to feel powerless or uncomfortable. How can we learn to respond with love and understanding? In a recent seminar (, we were taken back to basic principles: ‘People living with dementia are persons. They are looking for a sense of attachment, belonging and identity. They need to feel comfort and inclusion.’ ‘Realise the importance of feelings, and keep on visiting,’ said one of the speakers, reflecting on her experience of caring for her grandmother. Feelings continue when cognitive ability may have declined – pleasure when somebody visits, anxiety when surroundings are different, or sadness when somebody seems worried or impatient.The other priority is supporting the caregivers. They can feel isolated, ‘...just about managing to keep going,’ as a friend wrote recently. The Q&A session brought out some of those challenges, along with practical suggestions for communication. We also learned about local and national support organisations. A lot is being done but much more is still needed. We didn’t begin to address the challenges of the last 12 months, in which so many have been abandoned in loneliness. We hope to go deeper in further sessions, as well as repeating this basic seminar in April. So, relationships are most important. And family, friends, churches and community groups have a vital role in providing love, friendship and support. Our local church supported us well when my wife, Shoko, was living with Alzheimer's. People were warm, greeting us both with affection, talking to Shoko. They truly demonstrated the Gospel and the support of loving community – at a time when my faith was severely challenged.But I could see that many felt unsure how to relate; what help they could offer; afraid, perhaps, of making mistakes.Living with dementia, and caring for a person living with dementia, are strange situations. The disease may come in stages: sometimes not noticeable at all. There may still be a certain stigma to acknowledge it openly. Similarly, giving practical help doesn’t always seem straightforward. What can we offer and when? People may be reluctant to ask for help, or even to acknowledge their situation.But I believe we can be more open and intentional. When people recognised our situation and asked how we were (and meant it), I always found it encouraging.So, friends, churches, community group members – all need to take the initiative. Don’t wait to be asked but find out what will be helpful – from food to financial matters, health issues, going for a walk, transport, and more. It isn’t always easy. You might find your friend changed, perhaps not recognising you. Or even if she does, not engaging very much that day. If that is all you see, you may wonder if it is worthwhile. But it is. It brings pleasure at the time, even if soon forgotten. And, crucially, it supports the caregivers too. When visiting isn’t possible, it might be a phone call, letter, email or video call. For some this will only reach the caregiver – but that’s worthwhile. A friend used to phone me regularly, just to ask how things were going.So, what is the most helpful thing we can do? I learned – rather late in the day – that it was the way I related to Shoko.‘Your body language is more important than what you say,’ our daughter told me many times, long before I understood it myself.It was true. If the tone of my voice was impatient, or if I hustled Shoko to sit down, or get up, or go out, she found it distressing. ‘Why are you so cross with me?’ If I spoke softly, or held out an encouraging hand, the rewarding smile warmed me more than I deserved.

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