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Adopting a palliative approach to dementia care in the community : a participatory action research

1Department of Psychological Medicine, 2Department of Community Nursing, Changi General Hospital, Singapore Correspondence: Dr Tan Lay Ling, Senior Consultant, Department of Psychological Medicine, Changi General Hospital, 2 Simei Street 3, Singapore 529889. tan.lay.ling@singhealth.com.sg INTRODUCTION Based on the World Alzheimer Report 2015,(1) dementia is a rising public health concern and is expected to affect 132 million individuals worldwide by 2050. It is an incurable and progressive neurodegenerative disorder with long periods of dependency.(2) However, both professional and family caregivers often do not consider dementia to be a terminal or life-limiting illness.(3,4) This would hamper the provision of optimal end-of-life (EOL) care, which is an integral and critical component of dementia palliative care services.(5) A recent epidemiological study reported a 10% prevalence of dementia in individuals aged ≥ 60 years in Singapore.(6) Family members are intimately involved in the care of their loved ones with dementia.(7,8) Decisions on care, including Advance Care Planning (ACP) and EOL care, often have to be made by family caregivers on behalf of persons with dementia (PWD) who may lack the necessary mental capacity. Singapore ranked 18th out of 40 countries on a ‘quality of death index’ in a report commissioned by the Lien Foundation in 2010.(9) The report compared standards of EOL care across countries and motivated the development of the National Strategy for Palliative Care in Singapore. It highlighted the need for provision of palliative care services to all patients with lifelimiting illnesses and recommended adequate education and training of healthcare professionals to improve the quality of palliative care. The Community Psychogeriatric Programme (CPGP) was set up to provide community mental health services for early detection and treatment of psychogeriatric disorders in the eastern sector of Singapore.(10) The CPGP comprised clinical services and home visits to older individuals suffering from mental health problems who face difficulty accessing regular mental health services at hospitals or outpatient services. More than half of the home visits in the CPGP involve PWD with moderate to severe dementia. Moreover, specialist palliative services do not accept referrals unless the patients are predicted to die within the next 12 months from evaluation.(11) Although the CPGP team members were aware of these palliative care needs, they lacked training and clinical experience in rendering such care. Thus, the CPGP decided to undertake an investigation into our clinical practice and to explore how strategies could be developed to support a palliative approach in dementia care in the community. METHODOLOGY This study was granted exemption from review by the Centralised Institutional Review Board (CRIB ref 2020/2275). Action research methodology was adopted, as it focuses on facilitating changes in people’s practices, and understanding their practices and the conditions under which they practice.(12) The process helped examine taken-for-granted assumptions and habitual actions that constituted clinical practice.(13) Members of the CPGP team, comprising four nurses and two doctors, participated in a recurring helical action cycle that involved preliminary investigation and problem identification, planning, taking action and collecting data, analysis and reflection and re-planning.(14) Four focus group meetings were convened over six months to complete the first action cycle. Each focus group was led by the principal investigator through a qualitative enquiry process based on key problems identified in clinical practice. Meeting notes and focus group audio transcriptions were used to identify themes, and the Atlas Ti version 8 software (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany) was used to code and analyse the data.


INTRODUCTION
Based on the World Alzheimer Report 2015, (1) dementia is a rising public health concern and is expected to affect 132 million individuals worldwide by 2050. It is an incurable and progressive neurodegenerative disorder with long periods of dependency. (2) However, both professional and family caregivers often do not consider dementia to be a terminal or life-limiting illness. (3,4) This would hamper the provision of optimal end-of-life (EOL) care, which is an integral and critical component of dementia palliative care services. (5) A recent epidemiological study reported a 10% prevalence of dementia in individuals aged ≥ 60 years in Singapore. (6) Family members are intimately involved in the care of their loved ones with dementia. (7,8) Decisions on care, including Advance Care Planning (ACP) and EOL care, often have to be made by family caregivers on behalf of persons with dementia (PWD) who may lack the necessary mental capacity.
Singapore ranked 18th out of 40 countries on a 'quality of death index' in a report commissioned by the Lien Foundation in 2010. (9) The report compared standards of EOL care across countries and motivated the development of the National Strategy for Palliative Care in Singapore. It highlighted the need for provision of palliative care services to all patients with lifelimiting illnesses and recommended adequate education and training of healthcare professionals to improve the quality of palliative care.
The Community Psychogeriatric Programme (CPGP) was set up to provide community mental health services for early detection and treatment of psychogeriatric disorders in the eastern sector of Singapore. (10) The CPGP comprised clinical services and home visits to older individuals suffering from mental health problems who face difficulty accessing regular mental health services at hospitals or outpatient services. More than half of the home visits in the CPGP involve PWD with moderate to severe dementia. Moreover, specialist palliative services do not accept referrals unless the patients are predicted to die within the next 12 months from evaluation. (11) Although the CPGP team members were aware of these palliative care needs, they lacked training and clinical experience in rendering such care. Thus, the CPGP decided to undertake an investigation into our clinical practice and to explore how strategies could be developed to support a palliative approach in dementia care in the community.

METHODOLOGY
This study was granted exemption from review by the Centralised Institutional Review Board (CRIB ref 2020/2275). Action research methodology was adopted, as it focuses on facilitating changes in people's practices, and understanding their practices and the conditions under which they practice. (12) The process helped examine taken-for-granted assumptions and habitual actions that constituted clinical practice. (13) Members of the CPGP team, comprising four nurses and two doctors, participated in a recurring helical action cycle that involved preliminary investigation and problem identification, planning, taking action and collecting data, analysis and reflection and re-planning. (14) Four focus group meetings were convened over six months to complete the first action cycle. Each focus group was led by the principal investigator through a qualitative enquiry process based on key problems identified in clinical practice. Meeting notes and focus group audio transcriptions were used to identify themes, and the Atlas Ti version 8 software (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany) was used to code and analyse the data.

MAIN THEMES PERTAINING TO PROBLEM IDENTIFICATION
Difficulty conceptualising dementia as a terminal illness Some CPGP staff had difficulty viewing dementia as a terminal illness unless dementia was advanced. Staff also encountered challenges in communicating the concept of dementia as a terminal illness to the family caregivers of PWD. Nursing

Assessment of readiness of PWD and caregivers for ACP
Team members identified the need to systematically address the lack of understanding of the progressive nature of dementia among the PWD and caregivers. A checklist (Appendix) was drafted to include readiness to engage in such difficult conversations. This checklist would be used prior to subsequent home visits to serve as a reminder to the team members regarding the palliative care approach to dementia.

Utility of checklist
The checklist, renamed 'Facilitation of Care Planning Form' (FOCF) to better reflect its purpose, was piloted on five clients. However, although all five family caregivers endorsed that their loved ones were suffering from a terminal illness, only one proceeded to complete the ACP with PPC. NS 2: "Using the Form… helped me have a better sense of the caregiver's understanding of dementia and I am more ready to introduce ACP to her."

Reflections on ACP discussions
Staff were more confident regarding discussions of care preferences. Although many caregivers were still unprepared to discuss ACP, team members were able to better appreciate the patients' difficulties and be supportive in their grieving process. They were also better prepared to respond to questions regarding care preferences when the caregivers were ready. DS 6: "I find that I am more patient with the caregivers. Helping them come to terms with what is going on is more important than pushing care decisions on them."

Application of palliative care knowledge
Although both nursing and medical staff appreciated the opportunities to attend refresher courses, the availability of palliative specialists for consultation was considered even more educational and impactful. DS 5: "It has been really helpful attending courses and reading up on materials to keep myself abreast with palliative medicine developments but… the application of theory on the context of our patient pool is still not easy and we will need more guidance on the ground."

DISCUSSION
To the best of our knowledge, this is the first local study that investigated the adoption of palliative care principles in PWD by employing a qualitative approach. Despite mounting evidence that palliative care principles are appropriate for PWD, they are often not applied. (6) PWD are still exposed to onerous interventions that offer minimal or no benefit. This qualitative study identified the challenges encountered by the CPGP that were also cited by previous studies. It has been reported that both professional (3) and family carers (4) did not view dementia as a terminal illness. This might have contributed to the neglect in discussing EOL care for PWD and their caregivers. (15,16) A previous study also highlighted that PWD and their families were rarely informed that dementia is a terminal illness and palliative care principles were not discussed with them. (4) Using action research methodology, staff members were able to reflect on and critique their practice. It facilitated an examination of assumptions and habitual actions that constituted clinical practice (12) and eventually led to an endorsement that dementia is a terminal illness regardless of the stage of severity. Team members were better able to support PWD and their family caregivers with the psychological space to come to terms with the terminal illness concept and appreciate the value of a palliative care approach. Strategies were developed by the team members themselves to systematically assess the readiness of PWD and their family carers to engage in ACP discussions using the FOCF. Staff also recognised the need to enhance their confidence in facilitating ACP conversations in the dementia population. Active exchanges between CPGP staff and ACP course facilitators clarified misperceptions regarding the inability of PWD to engage in general ACP discussions in the early stage of their illness.
Although the importance of skill enhancement in palliative care principles in key providers of dementia care has been recognised, there is a dearth of literature on educational programmes and models of care with good educational impact on improving the quality of care of patients with advanced dementia. (15) A review of educational initiatives to improve palliative care for PWD reported that there have been few published evaluations of educational programmes, and even in studies wherein the outcomes were evaluated, the benefits for patients were not demonstrated. (16) This qualitative study similarly highlighted the challenges of application of palliative care knowledge following training courses and conferences. The participatory action research methodology adopted was intended to enhance the quality of education of healthcare professionals in dementia care. (17) Schemes to improve the quality of learning should be derived from a paradigm that embraces change, which is one of the characteristics of the action research methodology. The participation in action learning helped to identify problems encountered on the ground and generated solutions to equip the CPGP in their palliative care skills. The process was collaborative, flexible and circular, and allowed action with change and improvement simultaneously with research and evaluation. (14) As the strategies were formulated by the staff themselves, they were better accepted and adopted.
A recent review of engagement of primary stakeholders in decision-making for the future care of PWD in the community highlighted the complexity of the context in which PWD, family caregivers and healthcare professionals found themselves with regard to decision-making about future care. (18) This study was able to identify some facilitators and barriers to interdisciplinary communication between dementia care providers and palliative care in the community. Through participatory action research, CPGP members were empowered to link up with palliative specialist colleagues for consultations specific to dementia palliative care. This process facilitated continual professional development of staff and enhanced the quality of care of PWD and their family caregivers.
This study has some limitations. As it involved a community team of healthcare professionals caring for PWD and their caregivers, the insights and results shared might not be transferrable to other service settings and contexts.
In conclusion, our findings suggested that the participatory action research methodology was effective for developing strategies to facilitate staff training and engagement in palliative care provision in the community.