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The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.
BMC Geriatr. 2018 08 16; 18(1):184.BG

Abstract

BACKGROUND

ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia.

METHODS

A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes.

RESULTS

Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers.

CONCLUSIONS

ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Authors+Show Affiliations

Department of IQ healthcare, Radboudumc, Nijmegen, The Netherlands. Bram.Tilburgs@radboudumc.nl.Department of IQ healthcare, Radboudumc, Nijmegen, The Netherlands.Department of Primary and Community Care, Radboudumc, Nijmegen, The Netherlands. Radboudumc Alzheimer Centre, Nijmegen, The Netherlands. Joachim en Anna, Centre for Specialized Geriatric Care, Nijmegen, The Netherlands.Department of Medical Oncology, Radboudumc, Nijmegen, The Netherlands.Department of Primary and Community Care, Radboudumc, Nijmegen, The Netherlands. Radboudumc Alzheimer Centre, Nijmegen, The Netherlands. Department of Geriatric Medicine, Radboudumc, Nijmegen, The Netherlands.Department of Anesthesiology, Pain and Palliative Medicine, Radboudumc, Nijmegen, The Netherlands.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

30115008

Citation

Tilburgs, Bram, et al. "The Importance of Trust-based Relations and a Holistic Approach in Advance Care Planning With People With Dementia in Primary Care: a Qualitative Study." BMC Geriatrics, vol. 18, no. 1, 2018, p. 184.
Tilburgs B, Vernooij-Dassen M, Koopmans R, et al. The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study. BMC Geriatr. 2018;18(1):184.
Tilburgs, B., Vernooij-Dassen, M., Koopmans, R., Weidema, M., Perry, M., & Engels, Y. (2018). The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study. BMC Geriatrics, 18(1), 184. https://doi.org/10.1186/s12877-018-0872-6
Tilburgs B, et al. The Importance of Trust-based Relations and a Holistic Approach in Advance Care Planning With People With Dementia in Primary Care: a Qualitative Study. BMC Geriatr. 2018 08 16;18(1):184. PubMed PMID: 30115008.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study. AU - Tilburgs,Bram, AU - Vernooij-Dassen,Myrra, AU - Koopmans,Raymond, AU - Weidema,Marije, AU - Perry,Marieke, AU - Engels,Yvonne, Y1 - 2018/08/16/ PY - 2018/05/08/received PY - 2018/08/06/accepted PY - 2018/8/18/entrez PY - 2018/8/18/pubmed PY - 2019/4/26/medline KW - Advance care planning KW - Dementia KW - General practitioner KW - Primary care SP - 184 EP - 184 JF - BMC geriatrics JO - BMC Geriatr VL - 18 IS - 1 N2 - BACKGROUND: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. METHODS: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. RESULTS: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. CONCLUSIONS: ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers. SN - 1471-2318 UR - https://www.unboundmedicine.com/medline/citation/30115008/The_importance_of_trust_based_relations_and_a_holistic_approach_in_advance_care_planning_with_people_with_dementia_in_primary_care:_a_qualitative_study_ L2 - https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0872-6 DB - PRIME DP - Unbound Medicine ER -