The perspectives of people living with dementia and their carers on the role of the general practice nurse in dementia care provision: a qualitative study

Caroline Gibson; Dianne Goeman; Constance Dimity Pond; Mark Yates; Alison M. Hutchinson

doi:10.1071/PY24071

RESEARCH ARTICLE (Open Access)

The perspectives of people living with dementia and their carers on the role of the general practice nurse in dementia care provision: a qualitative study

Caroline Gibson ^A ^B ^* , Dianne Goeman ^A ^C , Constance Dimity Pond ^D , Mark Yates ^B ^E and Alison M. Hutchinson ^F ^G

+ Author Affiliations

- Author Affiliations

^A University of Newcastle, School of Medicine and Public Health, Callaghan, NSW 2308, Australia.

^B Grampians Health, Ballarat, Vic 3350, Australia.

^C Faculty of Medicine, Nursing and Health Sciences, Monash University, Frankston, Vic 3800, Australia.

^D University of Tasmania, Wicking Dementia and Teaching Centre, Hobart, Tas 7000, Australia.

^E Deakin University, School of Medicine, Geelong, Vic 3220, Australia.

^F Deakin University, School of Nursing and Midwifery and Centre for Quality and Patient Safety Research in the Institute for Health Transformation, Geelong, Vic 3220, Australia.

^G Barwon Health, Geelong, Vic 3220, Australia.

^* Correspondence to: caroline.gibson@uon.edu.au

Australian Journal of Primary Health 30, PY24071 https://doi.org/10.1071/PY24071

Submitted: 25 May 2024 Accepted: 30 October 2024 Published: 14 November 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

Models that optimise the role of the general practice nurse have the potential to deliver cost-effective best-practice dementia care in the primary care setting. Patient experience is recognised as a vital contribution to the design, provision and evaluation of healthcare services. The aim of this study was to gain insights into the healthcare needs and experiences of people living with dementia and carers as relevant to the provision of dementia care by general practice nurses.

Methods

A qualitative design with semi-structured interviews was employed. Data were transcribed verbatim and thematically analysed. Six carers and five people living with dementia who received care from a general practice nurse in the previous 12 months took part in the study.

Results

Five overarching themes were identified: (1) the general practice nurse and dementia care: a golden opportunity, (2) respectful communication: talk to me and hear what I am saying, (3) person-centred information: tell me what I want to know, (4) provide support: more than just information provision, and (5) include the carer: we are a team.

Conclusion

This study describes the experiences and healthcare needs of people living with dementia and their carer(s) with regard to the general practice nurse role. These findings can inform strategies to support the general practice nurse provision of dementia care that meet the healthcare needs of people living with dementia and carers.

Keywords: carers, nurses, people living with dementia, primary care, unmet needs.

References

Aminzadeh F, Molnar FJ, Dalziel WB, Ayotte D (2012) A review of barriers and enablers to diagnosis and management of persons with dementia in primary care. Canadian Geriatrics Journal 15, 85-94.
| Crossref | Google Scholar | PubMed |

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77-101.
| Crossref | Google Scholar |

Braun V, Clarke V (2021) To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health 13, 201-216.
| Crossref | Google Scholar |

Bunn F, Burn A-M, Goodman C, Rait G, Norton S, Robinson L, Schoeman J, Brayne C (2014) Comorbidity and dementia: a scoping review of the literature. BMC Medicine 12, 192.
| Crossref | Google Scholar |

Crotty M (2003) ‘The foundations of social research: meaning and perspective in the research process.’ (Sage Publications: Thousand Oaks, CA, USA)

Dewing J (2007) Participatory research: a method for process consent with persons who have dementia. Dementia 6, 11-25.
| Crossref | Google Scholar |

Evripidou M, Charalambous A, Middleton N, Papastavrou E (2019) Nurses’ knowledge and attitudes about dementia care: systematic literature review. Perspectives in Psychiatric Care 55, 48-60.
| Crossref | Google Scholar | PubMed |

Frost R, Rait G, Aw S, Brunskill G, Wilcock J, Robinson L, Knapp M, Hogan N, Harrison Dening K, Allan L, Manthorpe J, Walters K (2020) Implementing post diagnostic dementia care in primary care: a mixed-methods systematic review. Aging & Mental Health 25(8), 1381-1394.
| Crossref | Google Scholar |

Gibson C, Goeman D, Pond D (2020) What is the role of the practice nurse in the care of people living with dementia, or cognitive impairment, and their support person(s)?: a systematic review. BMC Family Practice 21, 141.
| Crossref | Google Scholar | PubMed |

Gibson C, Goeman D, Yates M, Pond D (2023) Best-practice recommendations to inform general practice nurses in the provision of dementia care: a Delphi study. Australian Journal of Primary Health 29, PY22276.
| Crossref | Google Scholar |

Gibson C, Goeman D, Pond D, Yates M, Hutchinson A (2024) General practice nurse perceptions of barriers and facilitators to implementation of best-practice dementia care recommendations—a qualitative interview study. BMC Primary Care 25, 147.
| Crossref | Google Scholar | PubMed |

Guidelines Adaptation Committee (2016) Clinical Practice Guidelines and Principles of Care for People with Dementia. NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People, Sydney, Australia. Available at https://cdpc.sydney.edu.au/wp-content/uploads/2019/06/CDPC-Dementia-Guidelines_WEB.pdf

Halcomb EJ, McInnes S, Patterson C, Moxham L (2019) Nurse-delivered interventions for mental health in primary care: a systematic review of randomized controlled trials. Family Practice 36, 64-71.
| Crossref | Google Scholar | PubMed |

Haley B, Heo S, Wright P, Barone C, Rao Rettiganti M, Anders M (2017) Relationships among active listening, self-awareness, empathy, and patient-centered care in associate and baccalaureate degree nursing students. NursingPlus Open 3, 11-16.
| Crossref | Google Scholar |

Khanassov V, Rojas-Rozo L, Sourial R, Yang XQ, Vedel I (2021) Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec. BMC Family Practice 22, 186.
| Crossref | Google Scholar | PubMed |

Mansfield E, Cameron E, Carey M, Boyes A, Nair B, Hall A, Sanson-Fisher R (2022) Prevalence and type of unmet needs experienced by people living with dementia. Journal of Alzheimer’s Disease 87, 833-842.
| Crossref | Google Scholar | PubMed |

Mansfield E, Cameron EC, Boyes AW, Carey ML, Nair B, Hall AE, Sanson-Fisher RW (2023) Prevalence and type of unmet needs experienced by carers of people living with dementia. Aging & Mental Health 27, 904-910.
| Crossref | Google Scholar | PubMed |

Manthorpe J, Samsi K (2016) Person-centered dementia care: current perspectives. Clinical Interventions in Aging 11, 1733-1740.
| Crossref | Google Scholar |

Norful A, Martsolf G, de Jacq K, Poghosyan L (2017) Utilization of registered nurses in primary care teams: a systematic review. International Journal of Nursing Studies 74, 15-23.
| Crossref | Google Scholar | PubMed |

Phillips J, Pond D, Goode S (2011) Timely Diagnosis of Dementia: can we do better? A report for Alzheimer’s Australia. Paper 24, Alzheimer’s Australia, Canberra.

Prince M, Comas-Herrera A, Knapp M, Guerchet M, Karagiannidou M (2016) Improving Healthcare For People Living With Dementia. Alzheimer’s Disease International (ADI), London. Available at https://www.alzint.org/u/WorldAlzheimerReport2016.pdf

Spenceley SM, Sedgwick N, Keenan J (2015) Dementia care in the context of primary care reform: an integrative review. Aging & Mental Health 19, 107-120.
| Crossref | Google Scholar | PubMed |

Stephen C, McInnes S, Halcomb E (2018) The feasibility and acceptability of nurse-led chronic disease management interventions in primary care: an integrative review. Journal of Advanced Nursing 74, 279-288.
| Crossref | Google Scholar | PubMed |

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19, 349-357.
| Crossref | Google Scholar | PubMed |

Zwingmann I, Michalowsky B, Esser A, Kaczynski A, Monsees J, Keller A, Hertel J, Wucherer D, Thyrian JR, Eichler T, Kilimann I, Teipel S, Dreier Wolfgramm A, Hoffmann W (2019) Identifying unmet needs of family dementia caregivers: results of the baseline assessment of a cluster-randomized controlled intervention trial. Journal of Alzheimer’s Disease 67, 527-539.
| Crossref | Google Scholar | PubMed |