Pre-qual Spotlight Blog: The ethics of forgetting - Balancing precision and empathy in dementia care

As an assistant psychologist in a Specialist Memory Service, I navigate complex ethical questions that require a balance between precision and empathy. Beyond clinical decisions like diagnosis and treatment, key considerations include informed consent, the right not to know and diversity. Each interaction, whether during assessments or support, is an opportunity to uphold a patient's dignity and wellbeing, which fosters compassionate and responsive dementia care.

The challenge of informed consent 

A key challenge I face is determining whether someone has the capacity to consent. While someone might initially understand what a cognitive test involves, the impact of short-term memory difficulties can make it harder for them to retain and apply this understanding over time . 

Do they fully grasp that completing a memory test could lead to a diagnosis of dementia, and what that might mean for their future?

At times, a patient might initially agree to cognitive testing but later become visibly distressed during the process. 

Should I push forward for the sake of precision, or prioritise their immediate emotional wellbeing?

This has led me to reflect on the importance of balancing long-term benefits with short-term distress. While achieving diagnostic clarity can guide future care, it's important to consider the patient's best interests when they lack capacity so immediate distress isn't overlooked in pursuit of long-term outcomes.

This experience reaffirmed for me that consent isn't just a one-off checkbox but an ongoing process. I learnt to consistently check in with patients, stay attuned to their comfort and adapt as needed.

Balancing autonomy and protection

The dilemma of respecting a patient's autonomy while ensuring their safety often arises when a patient declines specific interventions. For example, a patient may refuse a referral for a head scan due to anxiety about the procedure. While the scan might be a critical part of the formulation process, it's essential to respect their right to decline. 

When a patient declines despite discussing any anxieties, it's important to explore all possible avenues, including observations, neuropsychological testing, and family consultations, while empathetically addressing the patient's concerns.

When patients object to involving family members in discussions, the tension between respecting their autonomy and safeguarding becomes especially pronounced. While family input can be invaluable for understanding the patient's history and needs, contacting relatives against their wishes risks violating trust and autonomy. Navigating these decisions has shown me the importance of careful consideration, multidisciplinary team collaboration, and seeking guidance from the safeguarding team when needed.

The right not to know

An ethically complex area in dementia care is the right not to know your own diagnosis. I saw how, for some patients, receiving a diagnosis of dementia could be too upsetting, leading them to explicitly express a preference not to be informed. Honouring this preference respects their autonomy but can complicate care planning, particularly when family members or other caregivers need to understand the patient's condition so they can provide adequate support.

I grew to appreciate the significance of thoughtfully considering each decision, ensuring care plans are patient-centred and respect the patient's wishes. This often involved asking patients if it was acceptable to share relevant information with their family or seeking their consent to notify their GP, allowing support to be provided without overstepping their boundaries. Open communication and ongoing consent are key to achieving this balance.

Embracing diversity and fairness

Providing equitable dementia care requires understanding and addressing how diversity can impact assessments and treatment decisions. While tools like the Addenbrooke's Cognitive Examination-III (ACE-III) or the Montreal Cognitive Assessment (MoCA) are validated and effective they may not fully account for individual differences, potentially affecting a patient's performance.

Educational and cultural background, for instance, can significantly influence how patients approach and respond to test items, potentially leading to misinterpretations of their cognitive abilities. This highlights the importance of asking about and considering a patient's educational history, cultural background and first language during the assessment process to ensure a fair and accurate evaluation.

While it may not be possible to completely avoid bias, we can work to reduce it and use our awareness of each tool's strengths and limitations to interpret results more effectively. This ensures that assessments are as equitable and accurate as possible, accounting for diversity in patients' cultural and educational experiences.

Accessing services is another critical issue, as research highlights the significant inequalities in accessing diagnosis and care among underrepresented communities, often due to systemic barriers or mistrust in healthcare systems. Addressing these disparities requires proactive outreach, culturally informed practices and ensuring services are inclusive and accessible. I've seen how culturally informed practice can make a difference, for instance, when patients decline medication due to personal or religious beliefs, even if it could slow cognitive decline. By engaging in empathetic, open dialogue, I've been able to ensure their care remains respectful and collaborative.

Ethics in everyday decisions

I found that ethical challenges are rarely black and white and arise in daily decisions that require me to balance accuracy and respect for each patient's individual values. Regular training and ongoing professional development have been invaluable in helping me stay informed about best practices in ethical decision-making. I've learnt to use supervision when faced with uncertainty and explored alternative perspectives to ensure my decisions align with ethical standards and patient-centred care.

By embracing empathy alongside precision, we can foster a care environment where both clinical excellence and humanity thrive, ensuring dignity and trust for those living with dementia and their families and caregivers.

Author biography

Alexis Gott is an Assistant Psychologist at the Specialist Memory Service in Milton Keynes, Central and North West London NHS Foundation Trust.