Article Text

Original research
Evaluating the feasibility, experiences, facilitators of and barriers to carers and volunteers delivering Namaste Care to people with dementia in their own home: a qualitative interview study in the UK and the Netherlands
  1. Miriam L Haaksma1,2,
  2. Colette O'Driscoll3,
  3. Karlijn J Joling4,
  4. Wilco P Achterberg1,2,
  5. Anneke L Francke5,6,7,
  6. Jenny T van der Steen2,8,
  7. Hanneke J A Smaling1,2
  1. 1University Network for the Care Sector South Holland, Leiden University Medical Center, Leiden, Netherlands
  2. 2Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands
  3. 3Namaste Care, St Joseph’s Hospice, London, UK
  4. 4Amsterdam Public Health research Institute, Department of Medicine for Older People, Amsterdam UMC, VUmc site, Amsterdam, Netherlands
  5. 5Netherlands Institute for Health Services Research (NIVEL), Utrecht, Netherlands
  6. 6Amsterdam Public Health research institute, Department of Public and Occupational Health, Amsterdam UMC, VUmc site, Amsterdam, Netherlands
  7. 7Expertise Center Palliative Care, Amsterdam UMC, VUmc site, Amsterdam, Netherlands
  8. 8Department of Primary and Community Care, Radboud university medical center, Nijmegen, Netherlands
  1. Correspondence to Dr Hanneke J A Smaling; H.J.A.smaling{at}lumc.nl

Abstract

Objectives To evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers’ experiences with the programme.

Design Qualitative interview study with two phases: (1) preparation phase; (2) pilot phase.

Setting Private residences of community-dwelling people with dementia in the UK and the Netherlands.

Participants Family carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews).

Intervention Namaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions.

Results Phase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7–10).

Conclusion We recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5–2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia.

Trial registration number NL5570

  • Namaste Care
  • dementia
  • community-dwelling
  • carers
  • multisensory

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Footnotes

  • Twitter @MiriamHaaksma, @ColetteODris

  • Contributors JvdS, HJAS, KJJ and AF designed the preparation phase. JvdS and HJAS designed the pilot study. CO'D coordinated the data collection in the UK. HJAS and CO'D collected the data. JvdS, WPA and KJJ provided feedback on the initial analyses done by HJAS in the preparation phase. HJAS and MLH conducted the analyses and drafted the initial version of the manuscript. MLH is the guarantor. All authors contributed to the interpretation of the data and revised the manuscript for intellectual content.

  • Funding This study was funded by the Netherlands Organisation for Health Research and Development (grant number: 733050302), Fonds NutsOhra (grant number: 1405-181) and the University Network for the Care Sector South Holland.

  • Competing interests HJAS became the associate director of Namaste Care International (non-financial association) after the data collection was completed and the data were analysed.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.