More than 12,000 members benefit from nurse’s dementia support group on Facebook

Rebecca Lloyd Lewis aims to ensure people ‘don't feel alone on their dementia journey’

Rebecca Lloyd Lewis aims to ensure people ‘don't feel alone on their dementia journey’

Rebecca Lloyd Lewis with her late father Harold Griffith. Picture: Facebook

A Facebook group set up by a nurse to support people with dementia, and their caregivers, has attracted more than 12,300 members.

Rebecca Lloyd Lewis, a junior sister at Betsi Cadwaladr University Health Board in Wales, decided to establish the group three years ago after her father was diagnosed with vascular dementia.

Being there

‘This is something I feel strongly about, being a vessel to help others, with regards to offering support, advice and allowing camaraderie among members so they don’t feel alone on their dementia journey,’ she said.

‘I was part of a Facebook group after my father was diagnosed, but it was all very negative, with photos of people with advanced dementia. I decided to leave and set up my own group for people to gain more insight, advice and support.’

Importance of support

Ms Lloyd Lewis, who works on a comprehensive assessment unit that cares mainly for older people, said her family was given a lot of support when her father, who passed away last year, was diagnosed.

‘We had a good social worker and respite care so I could take my Mum out,’ she said. 

‘We had a positive experience with services, but I think that is quite unusual.’

The nurse said the Support for Vascular, Alzheimer’s and Mixed Dementia group is now the second-largest vascular dementia group on Facebook and has members worldwide, including students who want to undertake research with other members.

Showing empathy

‘Families and other caregivers have been so grateful to have a forum to voice their concerns and be signposted to organisations that can help them,’ she added.

‘The group is a lot of work and I will eventually need help, but I have gained so much knowledge and insight into dementia and have been able to bring this into my work. This allows me to be more understanding and empathetic towards those in all stages of dementia.’ 

Ms Lloyd Lewis’s advice for nurses and caregivers of people with dementia

  • Listen
  • Be patient
  • Be understanding and empathetic
  • Talk to relatives of the individual with dementia, to get a picture of the person they once were
  • Do not patronise or condescend, treat the person like an adult
  • Find out what their job or hobbies used to be; show interest and discuss these by asking basic questions
  • Keep the conversation simple
  • Engage in activities such as a simple jigsaw, a reminiscence book or looking at old pictures
  • Find out what music they used to like and play it to them; many research articles highlight the benefits of music for people with dementia

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