Being in connection
Finding active ways to connect to ourselves, each other and our life world more generally makes life meaningful and helps the sense of isolation experienced by people with dementia and their carers. It is easy to forget that the experience of dementia is relational. We are, all of us, relational beings – meant to be in connection with others, meant to be held in connection with others.
Our task as carers is to hold a person with dementia in connection for as long as that is humanly possible – and to find ways to ensure that happens. That might mean at home, going out or visiting if your loved one is in a nursing home.
Difficult emotions will be experienced by the person who has dementia and also by those who care for them. Carers who can, for the most part, manage their own emotional roller-coaster experience will be better able to cope with the difficult and often unpredictable emotions of people with dementia. Doesn’t mean we always achieve this – but ‘good enough’ is good.
Difficult emotional times underscores the need for emotional connection. This can be encouraged for many people with dementia by providing opportunities to feel and experience the simple things that promote positive feelings like music, dance, children, animals, and sensory activities.
And it also underscores the need for emotional connection for carers – the person you are caring for may not be able to give you the support you need – make sure you find time to spend with others, find stimulation in a movie, invite someone over for a cuppa. Avoid the loneliness. All of us need to know that there are people holding us is connection, not just the person with dementia.
Gaynor: Charlie was a strong and caring man, always there for others. So it was hard when he looked at me with so much fragility in his face, his emotional pain obvious. ‘I just can’t remember anything. It’s terrible. I just can’t work it out, you know, that place . . .’ He didn’t have the thoughts, nor the words. He would sometimes have tears in his eyes. His confusion was great, and so was my anguish. I would get him to sit down, maybe with a cuppa or a chocolate, if something ‘nice and comforting’ was handy. I would put my arm around him and tell him that I understood, that he didn’t need to explain, as I knew he had not been well, but that it was ok. It was ok not to remember because I was there, and I could remember for him. I would reassure him, let him know I always would be there. And I would laugh at things I sometimes couldn’t remember – what’s wrong with forgetting, after all! – and, anyway, it might come back to him, or to me, later on . . . and he would relax and we could find other things to do.
I came to see that vulnerability was one of the most important ways for me to think about the impact of dementia on Charlie. We are all vulnerable at different times in our lives – because of sickness or injury, fear in threatening situations, running out of money, being lonely – so many times. And we are vulnerable even when we don’t realise it – like toddlers who think they can run but don’t know that there is a road in front on them. And we can feel vulnerable even when the threat is not real, afraid of an unknown.
That is when we need to feel safe, to be reassured by people we trust, to have our calm and strength restored. And that’s what Charlie needed lots of – reassurance. And explanations, even if he didn’t always understand them, he knew I was trying to explain!
I learnt to see that so much of his frustration, the lashing out, anxiousness, stubbornness, aggression, could be seen through the same lens – when he didn’t understand what was going on, what he wanted to do, what he ought to do, or why people were doing things to him, or why he couldn’t go and do things he wanted to do. I did lots more gentle explaining, all the time. Not that it always worked to calm or reassure him, but lots of the time it did.
USING ALL OUR SENSES
Mark Huntsman: ‘Providing the most effective care means maximizing the opportunities these individuals have to reconnect with a world they’re losing access to’
Gaynor: Charlie loved photos. We would spend many hours going through them. In the early stages, we could talk about the places and people in them. As his dementia advanced he could recognise most of the people he was close to but maybe not the places or stories, and maybe not the names. And in the later stages, he may not have known ‘who was who’ – although sometimes it seemed he may have – but he still enjoyed going through them. Everywhere we went I took a boxes of photos for him to enjoy. And then he started cutting around them – he was always good with his hands, and he would neatly clip off the corner, to make them look nice, or would cut off someone he didn’t recognise and leave the person he did!
This is Charlie going through a photobook we made of Charlie working with his Dad when he was in his twenties. He is enjoying this time with his granddaughter, Natalie Anderson. His Alzheimer’s was very advanced by then but his photos were a wonderful way for him to connect, and others to connect with him. And what did it matter if he didn’t actually remember the people in them! The real enjoyment, after all, lies in the sharing.
These photos of Charlie were all taken when his Alzheimer’s was very advanced...
• With a photo of his daughter, Felicity Gay, and an orangutan! Was he sharing his dessert?
• Charlie showing someone a special photo
• Charlie going through photos with his granddaughter, Natalie Anderson
While craft activities and the Montessori method aren't for everyone, their emphasis on the importance of sensory experience could be particularly enjoyable for some
More examples of stimulating activities can be found here :-
Depending on the needs of the person with dementia, stimulating or calming sensory environments can be created by carers if desired.
Dementia, particularly in the later stages can restrict a person’s capacity for movement. Keeping up our ability to move means keeping up all kinds of connections that we are able to make through our bodies – walking to the coffee shop, visiting family, eating, shaking hands, getting in and out of the car. Look after bodies as well! Our bodies help us connect with our world.
Kate: In the later stages of his dementia, I remember we were visited at the home by a physiotherapist who was there because Charlie’s mobility had decreased significantly. The therapist, a very well-meaning enthusiastic professional, had recommended we have Charlie stand-up then sit-down for three sets of ten repetitions. I chuckled to myself, thinking how extraordinarily confusing he would find it to stand up and sit down twice in a row, much less for three sets of ten repetitions! What I did instead was make use of the times when Charlie was feeling energetic. In the evening, for instance, when he became restless we would go for an adventure, walking around the house together looking for ‘lost’ objects. I always made sure he had enough energy to come safely back to his chair and that we took his wheeler so we could rest a little on the way if needed. Reflecting back, those were special moments where we really did connect.
I started taking Charlie to gym with me as I couldn’t leave him at home. Then we visited a friend who recommended using a cross-trainer – great to help people with dementia (and to ward it off). Charlie didn’t get to the cross-trainer stage but he did use the bike, the strength machines and the boxing bags! The kind manager of Balmain Fitness, Morris, let Charlie join me for free, and we had shared sessions with my personal trainer, Paula. See some fun photos of Charlie at gym.
From Dementia Australia
Maintaining dignity is essential for social connection. For instance, assuming someone no longer cares about their appearance and so not maintaining it for them or speaking to people who have dementia with that all too common condescending voice. Taking the time to groom and dress people as they would have liked to be seen by others is important for social connection.
Gaynor: One day, I arranged with our professional home carer, who looked after Charlie while I was at work twice a week, to bring him to bring him to my workplace as we had a special ‘do’ and a dinner to follow. They arrived on time, late afternoon, but Charlie was in ‘at home’ clothes, had not had a shave and his hair had not been combed. How thoughtless and inconsiderate. He would never have gone out looking like that – he was always meticulous about his appearance. I am not sure if my anger was due to being mortified on his behalf or embarrassed for myself – it seemed as if I was not caring for him well enough. I was annoyed, and disappointed – and, after all, I was paying the carer. I made sure that other carers who worked for us always ensured he looked good when he left home.
The following website has good tips for easily overlooked things that help maintain a person’s dignity:
Dementia Australia offers this fact sheet that helps look at some of the ways of addressing communication which is essential to maintaining dignity.
For people who are comfortable with animals they can be a great way to have emotional connection. While pet therapy is becoming increasingly more common, not many people know that assistance dogs can be used to help people with dementia.
Phil has younger onset dementia and is one of the first people in Australia to have a dementia assistance dog for this reason. Sarah, his guide dog, is able to sense when Phil is feeling anxious and calm him down. She is able to keep Phil really independent as well as being great company.
Opposite: Phil speaking at a dementia workshop in September 2018, with Sarah waiting patiently with him
Gaynor: My cousin, John, looked after my aunt through her Alzheimer’s. Chance wasn’t a ‘dementia dog’ but he turned himself into one! He looked after my aunt all the time, which was a great help to John as well.
Below: Solita Macdonald, with Chance
that outline some of the effects and how to access the benefits of pet therapy.
Dogs 4 Dementia
This program has now completed but there is a good video worth watching and there is some general information about the training of dogs for dementia.
Robotic pets helping people with dementia (and which discuss pros and cons)
Robotic Pets Are Helping Dementia Patients (HBO)
Robotic Pets Bring New Approach To Patients With Dementia
Robots helping people with dementia | Wendy Moyle | TEDxGriffithUniversity
Grace Medows , Music therapist for the NHS U.K: Music enables people to be contributors and not just recipients of care. It provides opportunities for people to reconnect with a sense of autonomy and agency, at times when they may feel as though they have little or no control because of the impact of dementia.
This comprehensive campaign aims to increase public awareness of how music can be an important part of the lives of people living with dementia. It’s a very user-friendly U.K website. It refers to studies that look at the social and health benefits of music. It also includes practical ways of incorporating music for social interaction or for people with dementia to connect with themselves.
Grace is involved with ‘Music for Dementia 2020’:
The ‘music for memory project’ (USA) depicted in this YouTube clip shows Joanna. She has been assisted in her nursing home with a personal iPod and her favourite tunes and gets great happiness from bopping away.
The following tip from Kate, who cared for her mum, shows how music helped their family.
‘If you have young children in your family record them singing. We had a CD of my children singing Mum’s favourite songs and we played it every time Mum was feeling agitated. There was something about the sound of their sweet little voices that made her calm down instantly when she heard it.’
Dementia Australia also provide tips about using music.
Many people can attest to the humorous side of dementia stories and their power to help us overcome its more unpleasant aspects. Humour is also good for people with dementia (all of us!).
Kate: I remember many times cracking up laughing with Charlie to the point of being in tears. I have no idea if he was laughing
at the same thing I was. The important
thing was that we were cracking up together.
Forgot Alzheimer Joke, by Alan, 4 November 2010. https://www.toonpool.com/cartoons/Forgot%20Alzheimer%20Joke_103579
Cathy Greenblat in her photographic collection ‘love loss and laughter’ seeks to draw our attention to the ‘hearty laughter’ that is often less explored than some of the other emotions surrounding dementia
An article about the effect of comedy on a dementia patient
And our cartoons on this website are thanks to Meg Smith – read about Meg at: