Cruse Volunteer Support Invaluable to Carers Supporting People Living with Dementia

Research has shown that individuals living with dementia and their family may deal with feelings of loss and grief, sometimes called “ambiguous loss” or “anticipatory grief” when a person develops dementia. This type of grief is often overlooked by society because the person is still present, although changes and loss during the journey with dementia are gradual, they may be significant for those affected by dementia.

Sue Phelps, Alzheimer’s Society Cymru Country Director said: “Improving access to pre-bereavement support and helping people better cope with the feelings of loss and grief through their journey is vital to helping people live well with dementia.” The coronavirus pandemic has made living with and caring for someone with dementia increasingly challenging, therefore, now more than ever, the availability and accessibility of support for people is essential.

The service has been funded by the Integrated Care Fund as a pilot in Wales with 72 Cruse volunteers already completing the specialist training. The training has given Cruse volunteers an insight into what it’s like to care for someone with dementia and how to support people if the relationship between the caregiver and the person with dementia changes. One volunteer stated that the training was “invaluable that is, because the more you know about other people and what they’re going through, you can empathise better”.

Cruse have already supported 82 clients affected by dementia who are experiencing feelings of loss and grief. Support is provided based on the individuals needs either on an individual basis over the phone/ web or in groups. To make a referral or find out more about the support available email: .

Gwenllian Hughes the researcher at Bangor University working on the study, interviewing and analysing feedback from volunteers and clients stated that “So far the feedback on the support Cruse Volunteers offer and the training they experience has been very powerful and positive”. Quotes from clients illustrate this below.

Initial feedback from clients has highlighted the importance of the service as carers report feelings of loneliness and being “invisible”. Describing the telephone support as “..immeasurable, at a time of great darkness. Light in a storm!” Other clients described the service as “ a safe house, trusted, and secure space” enabling them to be seen as a person that “mattered”. 

These results to date highlight the importance of pre-bereavement support in enabling caregivers and family members to provide the best care and support for the person living with dementia and remind them to care for themselves as well. The evaluation is ongoing. 

There are already talks to expand the support into partner organisations in England and the final report will be available in early 2022.

Publication date: 18 May 2021