Carer preferences for home support services in later stage dementia

ABSTRACT

Objectives: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia.

Method: Preferences from 100 carers, recruited through carers’ organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.

Results: The most preferred attributes were ‘respite care, available regularly to fit your needs’ (coefficient 1.29, p = < 0.001) and ‘home care provided regularly for as long as needed’ (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall.

Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers’ preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

KEYWORDS:

• Dementia
• carer preferences
• home-based interventions

Acknowledgments

We would like to thank the following for their invaluable contributions to the study in terms of identifying carers who were requested to complete the electronic and paper-based surveys: Jean Tottie (Together in Dementia Everyday – TIDE); Anthony Hodgson (HOST-D Patient, Public and Carer Involvement Group); Kevin Winch (Home Instead Senior Care); Jacquelin Artiles (Lewy Body Society); Tracy Godden (Forget Me Not Memory Café); Angela Downing (Reflections); Tina Burgess (Kallarlodge Dementia Home); Julie McManus (Life Story Network); Jan Bourne and Vicky Hutchinson (Westbank Memory Café); Jo Horsfall (Crossgates Good Neighbours, Leeds); Ripaljeet Kaur (Touchstone Support Centre, Leeds); Brenda Stagg, Gary Marsh, Michelle Davies, Matt Murray and Alison Wrigglesworth (Alzheimer's Society); Elizabeth Butler (Making Space); Bev Graham (Sheffield Dementia Involvement Group); Sally Ferris (Together Dementia Support, Manchester); Jo Garsden (Manchester Institute for Collaborative Research on Ageing). We thank all study participants for taking the time to complete the study. Other members of the Programme Management Group were: Professor Martin Orrell (University of Nottingham), Professor Brenda Roe (Edge Hill University), Professor Ian Russell (Swansea University), Professor Fiona Poland (University of East Anglia), Narinder Kapur (University College London), Professor Chris Roberts and Professor David Jolley (University of Manchester), Jean Tottie (TIDE); and Reagan Blyth (Pennine Care NHS Foundation Trust). Nik Loynes (University of Manchester) designed and developed an interface to ensure efficient and accurate data entry for the study analysis. This work was funded by the National Institute for Health Research (NIHR), England under its Programme Grants for Applied Research (Grant reference number: DTC-RP-PG-0311-12003). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was funded by the National Institute for Health Research (NIHR), England under its Programme Grants for Applied Research [grant number: DTC-RP-PG-0311-12 003].