Dementia researchers need volunteers to help find human solutions

When people think of dementia research, new drugs or technology most often come to mind. 

Yet we also need to understand how talking, learning and interacting with others – ‘psychosocial’ approaches – make a difference.

‘While psychosocial interventions don’t cure dementia, they can make the lives of those affected more worth living,’ says Keith Oliver, who lives with young-onset Alzheimer’s.

They serve to give people connections, both to oneself and others.

Compassion Focused Therapy 

Keith co-leads a team of people affected by dementia who are helping to research Compassion Focused Therapy, a new talking therapy for people with dementia and low mood. 

Mel Melville, who coordinates the research, says, ‘Getting a dementia diagnosis can trigger grief-like emotions, causing sadness and anxiety due to loss of control, self-worth and identity.

Our study aims to help people cultivate kindness towards themselves during distress. Beyond a temporary solution, we are aiming for long-term positive changes that help individuals navigate dementia and low mood.

The approach involves online or in-person therapy sessions in small groups. These include mindfulness, compassion exercises and reflection on the impact of their diagnosis. 

‘Compassion Focused Therapy offers a varied toolkit for enhancing wellbeing by fostering self-compassion and a sense of safety,’ says Mel, who’s based at North East London Foundation Trust. 

The study is a feasibility trial – a vital stage to see whether a larger, more in-depth trial is warranted. 

We hope our work will show this approach is effective for people living with dementia and low mood, or at least contribute towards a better understanding of effective strategies.

Asked what he thinks makes Compassion Focused Therapy special, Keith’s answer is simple – ‘It worked for me!’

SMART for MCI 

Keith notes how psychosocial approaches are even more important for rarer forms of dementia, which have fewer drug options. 

This is also true for mild cognitive impairment (MCI), where someone has problems with abilities such as memory or thinking that aren’t serious enough for a dementia diagnosis. 

Nima Golijani-Moghaddam, at the University of Lincoln, underlines the impact MCI can still have on people. 

‘They’re dealing with cognitive deficits that interfere with everyday life and undermine their self-confidence,’ he says. 

Nima is researching a ‘brain training’ approach for people with MCI called SMART – Strengthening Mental Abilities with Relational Training.

Our work is ultimately about trying to promote cognitive health for people with MCI, to actively improve their experiences of living with MCI and take the opportunity to prevent further decline.

SMART focuses on improving a person’s ‘relational’ skills. 

‘These skills involve flexibly relating concepts to one another,’ says Nima. ‘This is fundamental to more complex cognitive abilities like memory, understanding, reasoning and problem-solving.’ 

Taking part 

Like the Compassion Focused Therapy study, the SMART for MCI trial has found people to take part through Join Dementia Research. 

We need the participants in our studies to be representative of the broad population of people affected by MCI and dementia.

‘This is so that we can really come to know what works best, for whom, in which circumstances, and why,’ says Nima.

Many people already gain a huge amount from activities like Singing for the Brain or CrISP (Carer Information and Support Programme) courses. 

‘These exist because people took part in research into them,’ says Sharon Boulter from our Join Dementia Research helpdesk. 

New approaches will only become available when people test them out in research studies. If it works, you may discover something that can help – and you will be one of the first people to benefit from it!