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A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias.
Stevens-Neck, Rosie; Walton, Jill; Alterkawi, Shaima; Brotherhood, Emilie V; Camic, Paul M; Crutch, Sebastian J; Gerritzen, Esther V; Harding, Emma; McKee-Jackson, Roberta; Rossi-Harries, Samuel; Street, Rebecca E; van der Byl Williams, Millie; Waddington, Claire; Wood, Olivia; Moore, Kirsten J.
Affiliation
  • Stevens-Neck R; North East London NHS Foundation Trust, London, UK.
  • Walton J; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Alterkawi S; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Brotherhood EV; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Camic PM; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Crutch SJ; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Gerritzen EV; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Harding E; Institute of Mental Health, Mental Health and Clinical Neuroscience, School of Medicine, University of Nottingham, Nottingham, UK.
  • McKee-Jackson R; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Rossi-Harries S; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Street RE; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • van der Byl Williams M; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Waddington C; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Wood O; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
  • Moore KJ; Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, UK.
Int Psychogeriatr ; : 1-12, 2023 Apr 04.
Article in En | MEDLINE | ID: mdl-37128845
ABSTRACT

OBJECTIVES:

Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.

DESIGN:

Pre-post interventional mixed methods study.

SETTING:

Online videoconference group program for carers across the UK held in 2021.

PARTICIPANTS:

Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. INTERVENTION The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. MEASUREMENTS We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2.

RESULTS:

Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression.

CONCLUSION:

The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Type of study: Evaluation_studies / Prognostic_studies / Qualitative_research Aspects: Patient_preference Language: En Journal: Int Psychogeriatr Journal subject: GERIATRIA / PSIQUIATRIA Year: 2023 Document type: Article Affiliation country: United kingdom
Fulltext
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Full text: 1 Collection: 01-internacional Database: MEDLINE Type of study: Evaluation_studies / Prognostic_studies / Qualitative_research Aspects: Patient_preference Language: En Journal: Int Psychogeriatr Journal subject: GERIATRIA / PSIQUIATRIA Year: 2023 Document type: Article Affiliation country: United kingdom