In any area of healthcare, the topic of end-of-life is very difficult. It’s hard to talk about for people with a diagnosis, their families and healthcare professionals. But it is important to discuss, particularly with people living with dementia.

Research has shown that people who have had end-of-life care conversations early on have an improved quality of life. That’s because as a person’s support needs increase, the care they receive more closely aligns with their values and preferences.

But there hasn’t been much research exploring end-of-life conversations with people living with dementia.

Tania Carter is a trainee counselling psychologist from York St John University. She wants to talk to people with dementia who have had a good conversation with a healthcare professional about end-of-life care and advance care planning.

Her study is recruiting participants through Join Dementia Research until March 2025. It’s open to people from Greater Manchester, Calderdale, Kirklees and York. Tania talks about why it’s important to get involved.

How do end-of-life care conversations happen at the moment?

Current guidelines recommend that conversations about end-of-life care and advance care planning should happen at the point of diagnosis.

However, healthcare professionals can be hesitant. Often, they have given a person a difficult diagnosis and they want to support people to live as well as possible. They don’t always want to talk about end-of-life challenges that may arise. But it is important to start that dialogue and talk about it not just one time, but regularly.

When we talk about end-of-life, many people focus on the last few days of life. But I want to look more broadly. I’m interested in people’s spiritual, cultural and holistic care needs from dementia diagnosis right through to the moments just before death. Through a person’s life and through the progression of dementia, a person’s values, needs and viewpoints can change. If people are never asked or given the opportunity to talk about what’s important to them, how can we tailor to their needs?

For example, being able to get outside in nature might be extremely important to a person’s well-being. But if they struggle to articulate that need in future, and it is not recorded anywhere, it may stop happening unnecessarily.

What do you hope to achieve with your research?

I’m really passionate about involving people living with dementia in this area of research. They are the key stakeholders, after all.

Research shows that people can be more reluctant to speak openly and honestly when people they know are present in the room. Even more so when talking about end-of-life and their changing needs. So, I’m planning to speak one-to-one with people who have experienced good conversations about end-of life care with a healthcare professional.

I want to really explore what made that conversation good. Hopefully this can influence healthcare professionals, educators and policy makers to make a real positive change for people living with dementia.

We’re seeing more and more people living with dementia being able to access palliative care and hospice care. But it’s still considerably less than in cancer. People living with dementia have the right to live well for as long as possible and to have their care and support needs tailored to their individual, holistic needs. But this cannot happen if no one is asking what a person’s care preferences are.

What will the study involve exactly?

First, I’ll have an initial chat with people who are interested in taking part. That can be over email, telephone or video call. We’ll talk about what to expect and identify a familiar location for the interviews, for example, at a local community centre or library.

We will then have two or three face-to-face interviews in that location. Together, we’ll explore what makes a good end-of-life care and advance care plan conversation with healthcare professionals. I’ll also invite people to bring a meaningful object of their choosing to help us to get to know each other.

Participants are able to have a trusted person to accompany them to the interviews and those people can be available in a separate room. That’s in case our conversations raise difficult emotions. But this person will not be involved in the research. I’m keeping an open mind with respect to what we’ll find out.

It is time we stop making assumptions and hear the most important voice of all, the voice of people living with dementia.

To find out if you are eligible to take part in a dementia study, sign in to your Join Dementia Research account. Or, if you are not already registered, sign up today.