Introduction
The journey following a dementia diagnosis is often fraught with uncertainty, not just for the individual diagnosed but also for their families. Dementia, an umbrella term for a range of progressive neurological disorders, fundamentally alters cognitive function, impacting memory, thinking, behavior, and the ability to perform everyday activities [1]. With the global prevalence of dementia rising – in Australia alone, projections estimate over a million people living with dementia by 2058 [2] – the need for comprehensive and proactive care planning becomes increasingly critical. A cornerstone of this care plan is advance care planning (ACP), a process that directly addresses the progressive nature of dementia and its inevitable impact on decision-making capacity [3]. Understanding how a dementia diagnosis necessitates and shapes the care plan through advance care planning is paramount to ensuring patient-centered and effective care.
Advance care planning is not merely about end-of-life arrangements; it is a dynamic and ongoing dialogue that empowers individuals to articulate their values, preferences, and wishes regarding future medical treatment and care, particularly in scenarios where they may lose the capacity to voice these themselves [4]. This process frequently culminates in the creation of an advance care directive, a legal document outlining these preferences, and the appointment of a substitute decision-maker, often through an Enduring Power of Attorney or Enduring Guardian, to uphold these wishes. Ideally, ACP is not a one-time event but an evolving series of conversations, regularly revisited and updated to reflect changing needs and priorities [5].
The benefits of engaging in advance care planning are well-documented. Research consistently demonstrates that ACP increases the likelihood that medical care aligns with an individual’s personal values and goals, reduces the incidence of unwanted hospital admissions at the end of life, enhances patient satisfaction and overall quality of life, and alleviates anxiety and decision-making burdens for families [6–8]. Furthermore, studies suggest potential healthcare cost savings, particularly for dementia patients in community and nursing home settings [9, 10]. In countries like Australia, the legal framework supports ACP, though specific terminology and requirements may vary across states and territories.
The significance of advance care planning is amplified in the context of dementia [11, 12, 13]. The progressive and unpredictable nature of dementia directly impacts an individual’s capacity to make informed decisions about their healthcare and personal well-being as the disease advances. Therefore, initiating advance care planning discussions soon after a diagnosis, while the individual still possesses decisional capacity, becomes critically important. However, despite the clear benefits and the progressive nature of dementia, studies reveal a significant gap in ACP engagement among individuals with dementia. A medical record audit indicated that only around 60% of Australians with dementia have documented advance care plans [14]. This highlights a critical need to understand the barriers to ACP in dementia care and to develop strategies to improve its uptake.
This article delves into the crucial relationship between a dementia diagnosis and the subsequent care plan, focusing specifically on the role and relevance of advance care planning. Drawing upon findings from a study examining carer perspectives on ACP in dementia, we will explore:
- The extent to which people with dementia engage in future medical planning, particularly in comparison to financial planning, and factors associated with completing advance care directives.
- The healthcare professionals who are typically involved in initiating advance care planning discussions following a dementia diagnosis.
- The preferred timing for initiating these crucial conversations, as perceived by carers.
By examining these aspects, we aim to underscore how a dementia diagnosis serves as a pivotal point that necessitates proactive care planning, with advance care planning as an indispensable component. Understanding carer perspectives, as highlighted in the study, offers valuable insights into optimizing the timing and delivery of ACP in dementia care, ultimately leading to more person-centered and effective care plans.
Understanding the Landscape of Advance Care Planning in Dementia: Insights from Carer Perspectives
A recent study surveyed 198 carers of individuals living with dementia in Australia to gain insights into their experiences and perspectives on advance care planning. The study, conducted between 2018 and 2020, aimed to understand the current landscape of ACP engagement in dementia care from the viewpoint of those who often play a central role in supporting individuals with dementia – their carers.
Study Methodology
The study employed a cross-sectional survey design, targeting carers aged 18 years and older who provided primary support to a person diagnosed with dementia living in the community. Participants were recruited through geriatrician clinics, aged care providers, respite centers, and carer support groups. The survey collected data on:
- Participation in Advance Care Planning: Carers reported on whether the person they cared for had completed various future planning documents, including advance care directives, Enduring Guardianship, Wills, and Enduring Power of Attorney, and whether these were completed before or after the dementia diagnosis.
- Discussions about ACP: Carers indicated who, if anyone, had discussed advance care planning with them or the person with dementia following the diagnosis.
- Preferences for Timing of ACP Discussions: Carers were asked about their views on the optimal timing for healthcare providers to initiate ACP discussions after a dementia diagnosis, considering information provided about the benefits and drawbacks of early versus late discussions.
Statistical analysis was used to analyze the survey data, focusing on descriptive statistics and associations between participant characteristics and ACP completion. Ethical approvals were obtained to ensure the study adhered to ethical research standards.
Key Findings: Gaps in Advance Care Directives and Timing Preferences
The study’s findings revealed several critical insights into advance care planning in dementia care:
1. Disparity between Financial and Medical Planning: The vast majority of carers reported that the person they supported had undertaken financial planning measures such as making a Will (97%) and appointing an Enduring Power of Attorney (89%). Enduring Guardianship, related to lifestyle and health decisions, was also high at 93%. However, a significant gap emerged when it came to advance care directives; only 47% of carers reported that the person with dementia had completed one.
This table illustrates the completion rates of different advance care planning documents among individuals with dementia, highlighting the lower uptake of advance care directives compared to financial planning instruments like Wills and Enduring Power of Attorney.
This disparity suggests a potential disconnect between planning for financial and legal matters versus planning for future healthcare preferences among people with dementia and their families. It raises questions about why medical advance care planning, specifically advance care directives, is less prioritized despite its crucial role in guiding future healthcare decisions.
2. Healthcare Providers Involved in ACP Discussions: Geriatricians (53%) and General Practitioners (GPs) (51%) were most frequently reported as initiating advance care planning discussions following a dementia diagnosis. Other professionals involved included family members (40%), lawyers/solicitors (31%), and nurses (24%). However, a concerning 19% of carers indicated that no one had discussed advance care planning with them or the person they cared for after the diagnosis.
This table details the various individuals and professionals who have engaged in advance care planning discussions with dementia patients and their carers post-diagnosis, with geriatricians and general practitioners leading as key initiators.
This highlights the important role of specialist and primary care physicians in initiating ACP conversations. However, the significant proportion of carers reporting no discussions underscores a missed opportunity to engage in timely ACP, especially given the progressive nature of dementia.
3. Preferred Timing for ACP Discussions: Carers expressed varied preferences for when ACP discussions should ideally commence. The most common viewpoints were:
- Within the first few weeks or months after diagnosis (32%).
- At the healthcare provider’s discretion (31%).
- At the time of diagnosis (25%).
Only a small minority believed discussions should wait until symptoms worsen (12%) or not occur at all (1%). This indicates a general consensus among carers that ACP discussions are appropriate and necessary soon after a dementia diagnosis, emphasizing the importance of early intervention.
The Relevance of Diagnosis to Care Plan: Bridging the Gap with Advance Care Planning
The findings of this study, viewed through the lens of “Discuss How The Diagnosis Is Relevant For The Care Plan,” underscore the critical role a dementia diagnosis plays as a catalyst for initiating and structuring a comprehensive care plan that prioritizes the individual’s future needs and preferences.
1. Diagnosis as a Trigger for Proactive Planning: A dementia diagnosis, while often devastating, serves as a crucial trigger point for proactive care planning. It signals the beginning of a progressive condition that will inevitably impact cognitive abilities and decision-making capacity. Therefore, the diagnosis itself highlights the relevance of advance care planning to the care plan. Without a diagnosis, the need for ACP might seem less urgent or relevant. However, a dementia diagnosis makes it unequivocally clear that future capacity may be compromised, making ACP an essential and timely component of care.
2. Advance Care Planning as an Integral Part of the Dementia Care Plan: The study’s findings reveal that while financial and legal planning are well-addressed, medical advance care planning, specifically advance care directives, lags behind. This suggests that care plans may be inadvertently overlooking a vital aspect of holistic dementia care – ensuring that medical treatment aligns with the individual’s wishes as their condition progresses. Integrating ACP into the dementia care plan from the outset ensures a more person-centered approach. It moves beyond managing symptoms to proactively planning for future care needs and respecting the individual’s autonomy and values throughout their dementia journey.
3. Timing ACP Discussions to Maximize Impact: The carers’ preference for early ACP discussions – soon after diagnosis or at the healthcare provider’s discretion – further emphasizes the relevance of diagnosis to care planning. Initiating these conversations early, while the person with dementia still has decisional capacity, is crucial for several reasons:
- Empowering the Individual: Early discussions empower the individual to actively participate in shaping their future care, ensuring their voice and preferences are central to the care plan.
- Reducing Family Burden: Engaging in ACP early can alleviate the emotional and practical burden on family carers later in the disease progression when difficult healthcare decisions may need to be made.
- Aligning Care with Values: Advance care directives created during a period of capacity are more likely to genuinely reflect the individual’s values and preferences, ensuring that future care aligns with what matters most to them.
4. Role of Healthcare Providers in Facilitating ACP: The study identifies geriatricians and GPs as key players in initiating ACP discussions. This underscores the responsibility of healthcare providers in recognizing a dementia diagnosis as a critical juncture for care planning, including ACP. Healthcare providers are uniquely positioned to:
- Initiate conversations: Routinely introduce ACP as part of post-diagnosis care.
- Provide information: Educate individuals with dementia and their families about the benefits and process of ACP.
- Facilitate decision-making: Support informed decision-making regarding future care preferences.
- Connect with resources: Link families with legal and support services to complete ACP documents.
5. Addressing Barriers to Advance Care Directive Completion: The lower completion rate of advance care directives compared to financial planning documents points to potential barriers that need to be addressed. These may include:
- Emotional discomfort: Discussions about future incapacity and end-of-life care can be emotionally challenging for individuals and families.
- Lack of awareness or understanding: Individuals may not fully understand what advance care directives are, their purpose, or how to create one.
- Perceived complexity: The process of ACP may be seen as complex or daunting.
- Healthcare provider hesitancy: Healthcare providers may feel uncomfortable initiating ACP discussions or lack the necessary training or resources.
Addressing these barriers requires a multi-faceted approach involving public awareness campaigns, educational resources for healthcare providers and the public, and streamlined processes for ACP implementation within healthcare settings.
Conclusion: Diagnosis as the Starting Point for Person-Centered Dementia Care through Advance Care Planning
This exploration, grounded in carer perspectives on advance care planning in dementia, reinforces the undeniable relevance of a dementia diagnosis to the subsequent care plan. The diagnosis is not merely a label; it is a critical turning point that necessitates a proactive and person-centered approach to care. Advance care planning, particularly the creation of advance care directives, emerges as an indispensable element of this care plan.
The study’s findings highlight a concerning gap in the completion of advance care directives, despite high rates of financial planning among people with dementia. This underscores the need for greater emphasis on medical advance care planning to ensure holistic and person-centered dementia care. Carers overwhelmingly support early initiation of ACP discussions, recognizing the importance of planning while the individual still has capacity. Healthcare providers, particularly geriatricians and GPs, play a pivotal role in initiating these discussions and facilitating the ACP process.
Moving forward, efforts should focus on:
- Raising awareness: Increasing public and professional awareness about the importance of advance care planning in dementia care and the relevance of diagnosis as a trigger for ACP.
- Improving ACP uptake: Developing and implementing strategies to improve the uptake of advance care directives among individuals with dementia, addressing identified barriers.
- Empowering healthcare providers: Providing healthcare professionals with the necessary training, resources, and support to confidently and effectively initiate and facilitate ACP discussions.
- Further research: Conducting further research to understand the perspectives of people living with dementia themselves on ACP timing and preferences, and to develop and evaluate interventions to improve ACP engagement in dementia care.
In conclusion, a dementia diagnosis is not an end point but rather a starting point – the starting point for a journey of care that must prioritize the individual’s values, preferences, and future well-being. Advance care planning, initiated soon after diagnosis and integrated into the core of the care plan, is essential to ensuring that this journey is navigated with dignity, autonomy, and person-centeredness at its heart. By recognizing the profound relevance of diagnosis to care planning and embracing advance care planning as a cornerstone of dementia care, we can strive to provide more compassionate, effective, and truly person-centered support for individuals living with dementia and their families.
References
[1] pone.0286261.ref001
[2] pone.0286261.ref011
[3] pone.0286261.ref012
[4] pone.0286261.ref001
[5] pone.0286261.ref002
[6] pone.0286261.ref003
[7] pone.0286261.ref004
[8] pone.0286261.ref005
[9] pone.0286261.ref006
[10] pone.0286261.ref007
[11] pone.0286261.ref002
[12] pone.0286261.ref008
[13] pone.0286261.ref009
[14] pone.0286261.ref013
