Introduction
Receiving a dementia diagnosis is a life-altering event, not just for the individual but also for their families. While the initial diagnosis care plan addresses immediate concerns, it’s crucial to understand that this is just the beginning of a journey. Advance care planning (ACP) emerges as a vital process in dementia care, focusing on what happens after the initial diagnosis and care plan are established. It’s about proactively shaping the future for individuals living with dementia, ensuring their values and preferences guide their care as the condition progresses.
Advance care planning is defined as a process where individuals with decision-making capacity reflect on their values, understand the implications of serious illness, and define their preferences for future medical treatment and care. These preferences are then communicated with family and healthcare providers [1]. For dementia, a progressive and unpredictable condition, ACP is particularly significant. It allows individuals to voice their desires for care while they still have the capacity to do so, ensuring these wishes are honored as their cognitive abilities decline. This proactive approach is not just about end-of-life decisions; it’s about encompassing all aspects of future care and life management.
Research consistently highlights the benefits of advance care planning. It increases the likelihood that care aligns with the patient’s wishes, reduces unwanted hospitalizations at the end of life, improves patient and family satisfaction, and alleviates family anxiety and decision-making burden [3-5]. Furthermore, studies suggest potential healthcare cost savings, particularly for community-dwelling individuals with dementia [6, 7]. Given the growing prevalence of dementia, with estimates projecting over a million Australians living with dementia by 2058 [11], the importance of effective advance care planning strategies cannot be overstated.
Despite its recognized importance, studies reveal a gap in ACP engagement among people with dementia. A recent audit indicated that only around 60% of Australians with dementia have documented advance care plans in their medical records [13]. Interestingly, financial planning, such as creating a will or appointing a power of attorney, is more common than planning for future healthcare wishes [14]. This disparity underscores the need to understand and address the barriers to advance care planning in dementia care and to emphasize what steps should be taken following the initial diagnosis care plan.
This article explores the crucial aspects of “What Comes After Diagnosis Care Plan” in the context of dementia. It draws upon research insights to address key questions: What future planning steps are commonly undertaken after a dementia diagnosis? Who are the healthcare professionals involved in these discussions? And when is the optimal time to initiate and continue advance care planning conversations? By understanding these facets, we can better support individuals with dementia and their families in navigating the complexities of long-term care and ensuring person-centered care throughout their dementia journey.
Understanding the Landscape of Post-Diagnosis Planning
After a dementia diagnosis is delivered and an initial care plan is in place, families often find themselves facing a range of critical decisions. These extend beyond immediate medical needs and encompass legal, financial, and personal care considerations. Research provides valuable insights into the types of planning activities undertaken and the healthcare professionals who typically guide these processes.
Financial and Legal Planning: Laying the Foundation
Perhaps unsurprisingly, financial and legal planning are frequently prioritized after a dementia diagnosis. Studies show high rates of will preparation and appointment of enduring guardians and powers of attorney among individuals with dementia [14, 20]. These actions are often seen as essential to secure the person’s financial future and ensure legal protection as cognitive abilities decline.
Alt Text: Table 2 from the original study, showing the percentage of participants who completed advance care planning documents before and after a dementia diagnosis. It highlights that while wills and enduring power of attorney are commonly completed, advance care directives are less prevalent, indicating a gap in medical future planning.
Data from a survey of carers reveals that a significant majority of people with dementia have made a Will (97%), appointed an Enduring Guardian (93%), and established an Enduring Power of Attorney (89%). These figures emphasize the proactive approach many families take in securing financial and legal matters. These arrangements ensure that designated individuals can manage finances and make legal decisions on behalf of the person with dementia when they lose capacity.
Advance Care Directives: Charting the Course for Future Medical Care
In contrast to financial and legal planning, the completion of advance care directives (ACDs), which outline future healthcare wishes, is less common. Research indicates that only around half of individuals with dementia have an ACD [13]. This gap is concerning because ACDs are crucial for ensuring that medical care aligns with the person’s values and preferences, particularly as dementia progresses and decision-making capacity diminishes.
The same carer survey found that only 47% of people with dementia had completed an advance care directive. This lower rate suggests potential barriers to engaging in medical ACP. These barriers might include discomfort in contemplating future health decline, lack of awareness about ACDs, or insufficient guidance from healthcare providers on initiating these conversations.
Healthcare Professionals: Who Leads the Advance Care Planning Conversation?
Identifying the healthcare professionals who are most actively involved in advance care planning discussions is essential for improving ACP uptake. General practitioners (GPs) and geriatricians emerge as key figures in this process.
Alt Text: Table 4 from the original study, showing the percentage of participants who reported discussing advance care planning with various healthcare professionals and family members after a dementia diagnosis. Geriatricians and General Practitioners are the most frequently mentioned, highlighting their central role in initiating these crucial conversations.
The survey of carers revealed that geriatricians (53%) and GPs (51%) were most frequently reported as having discussed advance care planning following a dementia diagnosis. This highlights the crucial role of these medical professionals in initiating ACP conversations. Other professionals, such as nurses and lawyers/solicitors, are also involved, albeit less frequently. Notably, a significant proportion (19%) of carers reported that no one had discussed advance care planning with them or the person they care for after the diagnosis. This underscores a missed opportunity to provide timely and essential support.
Timing is Everything: When to Initiate ACP Discussions
The question of when to initiate advance care planning discussions after a dementia diagnosis is a complex one. There are varying perspectives on the optimal timing, balancing the benefits of early planning with the emotional impact of a new diagnosis.
Carer preferences for timing of ACP discussions reveal a range of views. While a quarter of carers believe discussions should occur at the time of diagnosis, the majority feel it should happen in the first few weeks or months following diagnosis (32%) or at the healthcare provider’s discretion (31%). Only a small percentage (12%) think discussions should wait until symptoms worsen, and a negligible 1% believe ACP should not be discussed at all.
This suggests that most caregivers recognize the importance of initiating ACP discussions relatively early in the dementia journey, allowing individuals to participate meaningfully while they still have sufficient cognitive capacity. However, the variability in preferences also highlights the need for healthcare providers to be sensitive to individual circumstances and preferences when approaching ACP.
Navigating the Path Forward: Best Practices in Post-Diagnosis Advance Care Planning
Understanding the current landscape of post-diagnosis planning is only the first step. To truly improve dementia care, we need to translate these insights into actionable strategies and best practices for healthcare providers and families.
Early and Timely Initiation: Seizing the Opportunity
The research emphasizes the importance of initiating advance care planning discussions soon after a dementia diagnosis. Early conversations allow individuals to express their wishes and values while they still have the capacity to participate actively in decision-making. This proactive approach ensures that their preferences are documented and can guide future care, even as their cognitive abilities decline.
Healthcare providers, particularly GPs and geriatricians, are ideally positioned to initiate these conversations. Integrating ACP discussions into routine post-diagnosis consultations can normalize the process and ensure that it is offered to all individuals with dementia and their families. Providing clear and accessible information about ACP, its benefits, and the different types of advance care planning documents is crucial.
Person-Centered Approach: Tailoring ACP to Individual Needs
Advance care planning is not a one-size-fits-all process. It must be tailored to the individual’s values, preferences, and cultural background. A person-centered approach involves actively listening to the person with dementia and their family, understanding their unique circumstances, and respecting their choices.
Discussions should be sensitive and empathetic, recognizing the emotional impact of a dementia diagnosis. Healthcare providers should be prepared to address concerns, provide support, and pace the conversations according to the individual’s readiness and comfort level. It’s also important to acknowledge that ACP is an ongoing process, not a one-time event. Plans should be reviewed and updated regularly to reflect changing needs and preferences as dementia progresses.
Collaborative Planning: Engaging a Multidisciplinary Team
Effective advance care planning often involves a multidisciplinary team. While GPs and geriatricians play a central role, nurses, social workers, counselors, and legal professionals can also contribute valuable expertise and support.
Nurses can provide ongoing support and education, helping families navigate the practical aspects of dementia care and ACP. Social workers can connect families with community resources and support services. Counselors can offer emotional support and facilitate difficult conversations. Legal professionals can provide guidance on advance care directives, powers of attorney, and other legal documents. Collaborative planning ensures that all aspects of the person’s needs are addressed comprehensively.
Addressing Barriers and Enhancing Enablers
Several barriers can hinder advance care planning in dementia care. These include lack of awareness, discomfort in discussing end-of-life issues, time constraints, and perceived lack of training among healthcare providers [14, 16]. Conversely, enablers include positive perceptions of ACP, belief in its benefits, and strong patient-provider relationships [4, 38].
Addressing these barriers requires multifaceted strategies. Public awareness campaigns can increase understanding of ACP and its importance. Training programs for healthcare providers can enhance their skills and confidence in initiating and facilitating ACP discussions. Streamlining ACP processes and providing resources and tools can make it easier for healthcare providers and families to engage in planning. Furthermore, fostering open communication and building trust between patients, families, and healthcare providers are essential enablers of successful ACP.
Conclusion: Empowering Future Care Through Proactive Planning
“What comes after diagnosis care plan” in dementia care is fundamentally about advance care planning. It’s about moving beyond the initial shock of diagnosis and proactively shaping the future to ensure person-centered care that honors the individual’s values and preferences.
Research highlights the critical need to improve engagement in advance care planning for people with dementia, particularly in completing advance care directives. While financial and legal planning are often prioritized, medical ACP requires greater attention and emphasis. GPs and geriatricians are key to initiating these discussions, ideally soon after diagnosis, taking a person-centered and collaborative approach.
By embracing advance care planning as an integral component of dementia care, we can empower individuals and families to navigate the challenges of this condition with greater control, dignity, and peace of mind. It’s about ensuring that even as dementia progresses, the person’s voice continues to be heard and their wishes are respected, guiding their care journey every step of the way.
References
[1] রেফারেন্স ১ (From Original Article)
[2] রেফারেন্স ২ (From Original Article)
[3] রেফারেন্স ৩ (From Original Article)
[4] রেফারেন্স ৪ (From Original Article)
[5] রেফারেন্স ৫ (From Original Article)
[6] রেফারেন্স ৬ (From Original Article)
[7] রেফারেন্স ৭ (From Original Article)
[8] রেফারেন্স ৮ (From Original Article)
[9] রেফারেন্স ৯ (From Original Article)
[10] রেফারেন্স ১০ (From Original Article)
[11] রেফারেন্স ১১ (From Original Article)
[12] রেফারেন্স ১২ (From Original Article)
[13] রেফারেন্স ১৩ (From Original Article)
[14] রেফারেন্স ১৪ (From Original Article)
[15] রেফারেন্স ১৫ (From Original Article)
[16] রেফারেন্স ১৬ (From Original Article)
[17] রেফারেন্স ১৭ (From Original Article)
[18] রেফারেন্স ১৮ (From Original Article)
[19] রেফারেন্স ১৯ (From Original Article)
[20] রেফারেন্স ২০ (From Original Article)
[21] রেফারেন্স ২১ (From Original Article)
[22] রেফারেন্স ২২ (From Original Article)
[23] রেফারেন্স ২৩ (From Original Article)
[24] রেফারেন্স ২৪ (From Original Article)
[25] রেফারেন্স ২৫ (From Original Article)
[26] রেফারেন্স ২৬ (From Original Article)
[27] রেফারেন্স ২৭ (From Original Article)
[28] রেফারেন্স ২৮ (From Original Article)
[29] রেফারেন্স ২৯ (From Original Article)
[30] রেফারেন্স ৩০ (From Original Article)
[31] রেফারেন্স ৩১ (From Original Article)
[32] রেফারেন্স ৩২ (From Original Article)
[33] রেফারেন্স ৩৩ (From Original Article)
[34] রেফারেন্স ৩৪ (From Original Article)
[35] রেফারেন্স ৩৫ (From Original Article)
[36] রেফারেন্স ৩৬ (From Original Article)
[37] রেফারেন্স ৩৭ (From Original Article)
[38] রেফারেন্স ৩৮ (From Original Article)
[39] রেফারেন্স ৩৯ (From Original Article)
[40] রেফারেন্স ৪০ (From Original Article)
[41] রেফারেন্স ৪১ (From Original Article)
[42] রেফারেন্স ৪২ (From Original Article)
Note: Replace “রেফারেন্স [number] (From Original Article)” with the actual markdown formatted references from the original article. For example: [1] [Reference Text from Original Article](#pone.0286261.ref001)
