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

End of life doulas support people with dementia to complete their lives in peace and contentment.

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.’

People at the End of Life Doula UK launch event.

A meeting of end of life doulas.

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.’

Caro Dent and Aly Dickinson.

Caro Dent and Aly Dickinson.

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.

Gazala Makda.

Gazala Makda set up a Carer’s Support Group on Zoom.

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.’

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5 comments

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Hi Sheila, thank you for adding your experience here. I am sorry to hear what has been happening. It seems to me that care of older people with dementia amounts to a perfect storm awaiting each individual. I had been trying to do what I could for so many years and it was very upsetting to see what what happened at the end of my Dads life. I don't mind my Dad dying but I want to know that he was as comfortable as possible to the end. I don't feel this was the case and going by my experience it probably isn't for many people with dementia. I agree its inhumane. A civilised society is judged by how it treats its most vulnerable.

Care for Dementia person from early diagnosis begins to end of life. It was important to listen to my partners wishes . Make all legal arrangement’s. Support from family and medical teem .
Watch for changes that become noticeable .
Make their environment as they would like. Most care homes will allow the person with Dementia to have his room , furnishings. Curtains and colours of their choice. Music , make their life one of peace. They are are a human being . Just like I am.

Our Dad passed away with kidney failure which was not picked up by the care home, and at the time he also had a fractured hip, likely to be from a fall a month previous. It is so sad that at the end of his life his needs went unnoticed. His physical needs were masked by his mental health and lack of ability to communicate. Also he was sufficiently sedated that we were unable to wake him when we visited.

We, the family, between us were in need of guidance with his care. We are all really sad that his last month would have been so terrible for him.

It was all the more upsetting to find an unopened card with photos from his granddaughter and great grandson in the card board box of possessions returned from the care home. The one thing that would have comforted him was contact with the family. I know that the place in his brain that held his family feelings was still active. It makes us all so sad.

I hope the Alzheimer’s Society can use this experience to help others. Many thanks.

Hello Lyn, so sorry for your loss. Our mum has late stage dementia and was rushed to hospital last week with extremely low blood pressure, so low the ambulance crew didn’t want to move her because it would kill her.
The hospital treated her for sepsis as a precaution but eventually found she was bleeding from the gastro area, indicative from blood in her stools. She had 2 blood transfusions. They cannot explore further due to her dementia and they don’t think she’d survive anesthetic. They’ve said she has damaged kidneys as a result.
They’ve patched her up and sent her back to the care home with liquid medication and a requested a blood test in 2 weeks. But the problem has not been sorted, it’s just being managed.
We are astonished the care home did not pick up on her pain. She doesn’t talk much, barely eating or drinking, incontinent. They called the GP who prescribed tablet antibiotics which was ridiculous for someone having difficulty swallowing.
We don’t know what to do now. The care home can monitor blood pressure and administer liquid meds but we feel as though more should be done. How do we make her time more comfortable because surely if the problem is not solved, it will still be painful. She cannot communicate her pain to us. It’s like there’s a gap in the care, from late stage dementia to a death brought on by a physical problem. It’s so inhumane.

Lyn and Sheila - we are so very sorry to learn about these upsetting and difficult situations.

We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will be able to provide advice and support relevant to you and your families. More details about the support line, including opening hours, are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

Please do call 0333 150 3456 if you need someone to talk to.

Alzheimer's Society website team

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