Talking about “the dark stuff”: opening up about bereavement in extra care housing

With death and bereavement now concentrated towards the end of the life course, older people are disproportionately affected by grief. 

Yet, older people are less likely to seek, and be referred to, bereavement support services than younger people. It is perhaps unsurprising then, that older people are at increased risk of complicated grief, psychological distress, social isolation, and mortality following a bereavement.   

The Bereavement Supporter Project, managed by Cruse Bereavement Care, funded by the Big Lottery Community Fund, and piloted by the ExtraCare Charitable Trust (ECCT) is a pioneering public-health approach to bereavement support for older people. The project is motivated to empower community-driven peer-support, and develop more open communication and awareness around death, dying, and bereavement.

A research team, based at Aston University (Birmingham) and the University of Bristol, are conducting an independent evaluation of the Bereavement Supporter Project.  A snapshot of our interim findings is presented here; the full report can be accessed via the Cruse website (opens new window).

'Talking about “the dark stuff”: opening up about bereavement in extra care housing'Bereavement Supporters

The majority of support provided by Bereavement Supporters would be considered informal - occurring in communal spaces within the village (e.g. the restaurant or café), on an ad hoc basis in response to need. 

Many Bereavement Supporters suggested that informal support was perhaps more important than formal referrals, because it:

• provides bereaved residents the opportunity to “test the waters” with prospective Bereavement Supporters;
• allows bereaved people to “take the top off their pain and then go about their daily lives”; and
• offers a critical opportunity to bypass ‘officialdom’ and explicitly asking for help.

We therefore argue that informal support may act as a lifeline, providing valuable in-the-moment support to individuals who otherwise would not have sought support.

ECCT Staff

• “[Training] gave us space to talk about bereavement, death, and how we want to respond to it”: The openness and engagement of staff marks an important step towards shifting the culture around death, dying, and bereavement within ECCT.
• “Sometimes it’s ok not to say anything”: Modifications to language and communicative style were frequently cited by staff as being a valuable feature of the training that had been applied in their interactions with residents. 
• More support for staff following the death of residents, and after handling difficult situations was requested.

Support Recipients (ECCT Residents)

• “It overloads me, and I can’t cope”: Bereaved residents reported feeling depressed, isolated, and unable to cope prior to receiving support.
• “Thanks for letting this lady look after me”: Residents welcomed the opportunity to speak with a Bereavement Supporter, even if ultimately, they did not continue with support.
• “My life is better now than it was before”: Some reported that receiving bereavement support had a meaningful impact on their wellbeing.

Our interim evaluation has demonstrated that the Bereavement Supporter Project is a valuable initiative that has elicited meaningful change for individuals.  Critically, it is also contributing to a shift in culture evidenced in a greater openness to talk about “the dark stuff”.  We are looking forward to initiating the next steps for data collection and writing the final report which will be published September 2021.