Compassion and connection: End of life support for people with dementia

What is an end of life doula?

End of life doulas provide practical, emotional and spiritual support to people who are coming to the end of their lives, including those who have dementia. Working with the person, their family and health and social care professionals, a doula helps the person complete their life in a way that brings peace and contentment. 

‘Doulas are person centred – we do not see the individual as a patient, illness or service user,’ says Aly Dickinson, Secretary of End of Life Doula UK. ‘They have individual experiences and emotions, and have lived a life that has meaning. They have values, wishes and preferences which should be respected.’

Trusted friend 

End of Life Doula UK provides support to people in England, Wales and the whole of Ireland, through doulas such as Caro Dent. 

‘I do the basics – the cooking, shopping, putting somebody to bed, but I think it’s the emotional and spiritual aspects that are missing for a lot of people,’ says Caro. ‘They might have carers coming for half an hour here or there, who of course aren’t able to fulfil that role.’ 

Caro looks to find out as much about someone as she can, from the person themselves and their family, who she also gets to know well. 

‘I want to be a safe and compassionate presence, building connection and becoming like a trusted friend,’ she says. 

Caro has found music to be the ‘most powerful tool’ for working with people with dementia, while touch and physical affection can be very important. Listening to a person and validating their feelings can also really help. 

‘I might not understand what’s making someone angry, but I take the stance that they know exactly what they’re saying, and that it’s meaningful to them,’ she says. ‘You don’t tell them to stop feeling whatever they’re feeling – then they know you’re on their side.’ 

Since the pandemic, Caro has had to stop all visits to care homes. She now only supports people within their own home while keeping her distance and wearing a mask. 

‘A recent visit to a 98-year old woman really brought home to me how difficult this last year has been for so many older people,’ she says. ‘Many refuse to feel sorry for themselves, so I try to encourage self-compassion.’

Joy and happiness 

Prior to the pandemic, end of life doula Lou was supporting a woman with dementia to come to terms with living in a care home. 

‘Mum was cross that she was in the home and blamed us,’ says the woman’s daughter. ‘Lou visited her and acted as an intermediary, to explain that we were too far away to look after her at home. 

‘Mum wanted to talk about herself, not as a wife or a mother, but about what made her happy – flowers, card games, her home. Although we found it difficult that she was not so interested in her family, we knew Mum was getting some joy and happiness in her life.’ 

As a result, this person became more accepting of her situation and expressed less anger towards her family. 

‘We think it is likely that she will end her days in the care home and that Lou, who is now starting to visit again in a protected pod, will be around for as long as Mum wants that companionship,’ says her daughter.

Lighten the burden 

With much of their work in care homes scaled back or stopped completely, End of Life Doula UK supports campaigns for relatives to be reunited with their loved ones. 

They have supported residents by video call, but with limited success. More positive has been a 24/7 telephone response service for family carers, and a monthly Carer’s Support Group on Zoom, set up by end of life doula Gazala Makda.

Moshin in Sussex, whose mum has dementia, says the group shares practical tips and advice, while also discussing wider issues such as self-care and resilience. 

‘Very often one person describes a problem which someone else has already experienced, so they are able to offer insight into how they dealt with it,’ he says. 

‘During these COVID times, Mum had to be reminded to wash her hands, but she found it annoying that we were constantly telling her. So we designed a little poster for every tap, which she likes. Sharing such ideas helps others in similar situations.’ 

The carer’s group – much like the rest of an end of life doula’s work – supports people to feel less alone.

‘Knowing there are others out there in the same boat helps a lot,’ says Moshin. ‘The sessions lighten the burden on my shoulders and I feel re-energised to carry on.’