What does it mean to help when the goal isn’t recovery?

On starting my role as an Assistant Psychologist at a Specialist Memory Service, I had a clear, almost textbook view of psychology: helping people get better. But in dementia care, 'getting better' is rarely the goal. Instead, the trajectory is often one of decline. This reality challenges my understanding of what it means to be a psychologist, forcing me to redefine success and discover a deeper purpose in this work. 

One moment stands out. As part of the Addenbrooke's Cognitive Examination cognitive assessment, we ask patients to write two sentences about anything they like, as long as they are complete and grammatically correct. One patient hesitated, then carefully wrote: 'I am very thankful for your help. I also feel glad that you listen to me carefully.' At first, I smiled – it felt nice to read those words. I also noticed with some relief that the sentences were grammatically correct, so I could score two points.

But then the weight of what the patient had written sank in. This wasn't just an answer to an assessment prompt; it was a reflection of how much being heard meant to him. In that moment, I realised psychology was about much more than diagnostics or interventions. It was about helping people navigate some of the most vulnerable moments of their lives, offering them reassurance and dignity even in the face of an uncertain future. Above all, it's about listening.

This insight has stayed with me throughout my time in this role. While we can't reverse the condition, we can provide something valuable: connection, understanding, and hope. These are the threads that bind the challenges and rewards of this field, reminding us that psychology is as much about being present as it is about solving problems, a delicate space where empathy is both vital and deeply tested.

The personal challenge: empathy under pressure 

As psychologists, empathy is fundamental to how we approach our work. It means offering compassion and understanding as individuals face some of the hardest moments of their life. The very nature of our interventions often places a spotlight on the losses people are experiencing. A cognitive assessment, for instance, doesn't just provide insight into someone's condition. It directly highlights their difficulties, bringing them face-to-face with the reality of decline.

Managing the reactions that follow – frustration, heartbreak, denial, and even anger – requires more than technical expertise. It calls for emotional intelligence, patience, and the ability to hold space for complex emotions, even when those emotions are directed at you. A simple validation like 'It's okay to feel upset; these are difficult things to talk about', can help de-escalate tension and foster trust. 

Family reactions also carry emotional weight that stays with you. I recall a family member, tears in their eyes, saying, 'This isn't the person I knew'. In those words, I heard both grief and longing. Dementia doesn't just affect the individual; it ripples through their family, and empathy must extend to them as well, helping them navigate shared grief and adapt together.

Given the emotional demands of this work, I've learned the importance of self-care. Whether it's taking walks, engaging in creative activities, or spending time with friends and family, these practices help me recharge. Supervision or peer support also provides an essential space to process challenging cases. Setting boundaries between work and personal life ensures I can continue to show up with the empathy and compassion my patients need.

The systemic nature of dementia care

Every family dynamic is unique. While some families adapt and rally around their loved one, others may struggle with denial or anger as they process the diagnosis. Adapting to these differences has been a key lesson in my role. What works in one case may not resonate in another, so flexibility is crucial. I found that I could engage families emotionally by asking open-ended questions such as 'What has been challenging for you?' to better understand their unique experiences. I also found value in providing tailored resources and suggesting caregiver support groups to help address their practical needs and offer a sense of community support.

Understanding the family's perspective is crucial because their view of the patient's difficulties can differ from the patient's own experience. Bridging this gap is vital for an accurate diagnosis and comprehensive care. However, asking family members about the patient in their presence requires sensitivity. I find it helpful to say 'I don't want you to feel like we're talking about you in front of you. Sometimes, changes can be hard to notice in ourselves, so hearing from family helps us get a fuller picture and find the best ways to support you.' This kind of framing emphasises collaboration and respect, helping to set a positive tone for the conversation.

Sometimes, offering families a separate space to share their concerns can be beneficial. Scheduling follow-up conversations or allowing input through written forms or phone calls gives families a chance to speak openly. These discussions are crucial, as dementia care often unfolds within cultural frameworks that shape how families respond to the diagnosis, adding complexity to an already emotionally charged process.

The cultural layer: Understanding differences

One memorable experience highlighted how cultural frameworks shape our understanding of dementia. A wife of a patient interrupted the questions, insisting that he was 'simply being lazy'. He remained silent, staring at the floor, as her words filled the room.

It became clear that cultural differences were influencing her perspective on dementia. In some cultural contexts, cognitive decline is seen as a failure of willpower or discipline, rather than a medical condition (Zhang et al., 2021). For her, believing that her husband wasn't 'trying hard enough' was perhaps easier than confronting the reality of his diagnosis.

This added another layer of complexity. Beyond addressing the immediate family dynamics, I had to navigate the cultural framework through which dementia was being understood. Helping her see that her husband's behaviour was not a choice but a symptom required a sensitive and patient approach. The discussion was reframed by focusing on observable, non-judgmental descriptions of his condition, saying something like: 'We've noticed that these behaviours are consistent with changes in the brain that can happen over time'. This explanation acknowledged gently introducing a medical understanding of dementia, also helping to foster a less blaming, more understanding perspective.

This experience highlighted the importance of cultural competence in dementia care. It's not just about delivering a diagnosis, but framing it in a way that resonates with the individual and their family, respecting their values while fostering understanding.

The rewards: Finding meaning amidst the challenges 

Working with people with dementia is a field that asks you to rethink connection, to celebrate resilience in its smallest forms, and to find joy even when the path ahead feels uncertain. These moments of meaning aren't just a bonus, they're the reason this work feels so fulfilling.

One of the highlights of my role has been helping with Cognitive Stimulation Therapy (CST) sessions. Designed to boost memory and social interaction, CST brings people together through tailored group activities, discussions, and games (Gibbor et al., 2020). What makes CST particularly special is not only its cognitive benefits but also the sense of community it fosters. Every session is wonderfully unpredictable, what I like to call 'chaotically beautiful'. Some participants dive in with enthusiasm, answering questions or sharing stories, while others sit back, taking it all in until just the right moment to join. There's laughter over silly word games, bursts of pride when someone recalls the correct answers in a quiz, and quiet nods of encouragement from one participant to another.

These sessions remind me that connection isn't about doing everything 'right'. It's about being present, creating spaces where people feel seen and supported. I'll never forget one physical game we did with a bat and balloon. Participants had to keep the balloon off the ground. I expected some to hold back, but to my surprise, everyone got involved. Hidden talents emerged, like when one participant nailed a perfect hit, or when another accidentally kept tapping the person next to them with the bat, sending everyone into fits of laughter.  

CST has taught me to embrace the beauty in imperfection. It's not about chasing big successes; it's about cherishing the small wins, the shared smiles, the moments of recognition, and the warmth of human connection. And that, for me, is the greatest reward of all.

Hearing their stories

Much like the joy and laughter shared in these games, the stories told by people with dementia reveal the essence of who they are, stories of family, careers, and cherished holidays that form the foundation of their lives. 

Research has shown Reminiscence Therapy can be effective in enhancing cognitive function and improving quality of life by encouraging individuals to reconnect with meaningful moments from their past (Saragih et al., 2022). A familiar tune, a cherished photograph, or a vivid memory of a past event can often unlock moments of clarity and joy, fostering a sense of connection and comfort.

For example, I recall a patient who couldn't remember what she had done yesterday but spoke in great detail about her daughter, her eyes lighting up as she described their special bond. This illustrates how reminiscence principles can be woven into assessments, not just to assess cognitive function, but to build rapport. When patients feel anxious or unsettled, bringing up familiar, personal memories can help them feel more comfortable and engaged. This can help the assessment to feel less daunting and more connected to their lived experiences.

Listening to these stories has also led me to reflect on my own life. We are all in the process of creating the memories we'll carry with us. Every small moment we experience now becomes part of the foundation of who we are and holds as much weight as grand achievements. When the details of day-to-day life blur, it's these enduring memories that stay with us, helping to define our identity and shape the stories we tell about ourselves.

This insight has reinforced my belief, as an Assistant Psychologist, in the importance of a person-centred approach to care. The person-centred model, which focuses on the individual's unique needs, is vital in dementia care and beyond. Tom Kitwood's (1997) pioneering work on person-centred care continues to shape this perspective. His insights remind us that deeply rooted memories and personal histories play a vital role in preserving identity, even as cognitive functions decline. In the later stages of life, these memories become anchors, reinforcing a sense of self and belonging. By focusing on the person behind the condition, we ensure that everyone is truly seen, heard, and respected, regardless of their cognitive abilities. 

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

References

Gibbor, L., Yates, L., Volkmer, A., & Spector, A. (2020). Cognitive stimulation therapy (CST) for dementia: a systematic review of qualitative research. Aging & Mental Health, 25(6), 1–11. 

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press.

Saragih, I. D., Tonapa, S. I., Yao, C. T., Saragih, I. S., & Lee, B. O. (2022). Effects of reminiscence therapy in people with dementia: A systematic review and meta‐analysis. Journal of Psychiatric and Mental Health Nursing, 29(6), 883-903.

Zhang, H., Zhou, Y., Ma, J., & Li, Z. (2021). Understanding help-seeking decisions in people with subjective cognitive decline: A systematic review of qualitative studies. Geriatric Nursing, 42(6), 1507–1516.