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Cruse Volunteer Support Invaluable to Carers Supporting People Living with Dementia

18th May, 2021

Researchers at the School of Health Sciences in Bangor University are currently evaluating a new service developed by Maxine Norrish at Cruse Bereavement Care Cymru and people affected by dementia in partnership with Alzheimer’s Society Cymru to provide emotional support following a diagnosis.

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: lossanddementia@cruse.org.uk .

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.

Editors Notes:

Anyone wishing to publish the press release are kindly reminded to follow the guidance on language developed by people living with dementia to avoid any upset or unintentional harm by using inappropriate language: https://www.dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf

The evaluation is being led by Dr’s Catrin Hedd Jones and Diane Seddon within the  Dementia Services Development Centre Wales http://dsdc.bangor.ac.uk/ Bangor University is also a partner in the Centre for Ageing and Dementia Research Wales funded by Health Care Research Wales https://www.cadr.cymru/en/  .For further information or to request and interview please contact the research project lead Dr Catrin Hedd Jones 01248 388872/ c.h.jones@bangor.ac.uk

Cruse Bereavement Care Cymru, part of the UK’s largest bereavement charity Cruse Bereavement Care, supports people affected by dementia with the help of trained Support Volunteers, in partnership with the Alzheimer’s Society Cymru. Cruse Volunteers offer support for people affected by dementia with their feelings of loss and grief. Bereaved by Dementia was a project supporting people with dementia and their families following a bereavement. Following its success, a new project focusses on improving access to pre-bereavement support. It supports people diagnosed with all forms of dementia, and their families in managing and better coping with difficult emotions and events associated with dementia from diagnosis onwards. The coronavirus pandemic has made living with and caring for someone with dementia challenging, therefore, now more than ever, the availability and accessibility of support for people is essential. To make a referral or find out more about the support available email: lossanddementia@cruse.org.uk

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