Dementia is a life-limiting illness and Amy, Joana and Marta offer specialist knowledge and skills to patients facing end of life who have this diagnosis. Trinity’s Community Dementia Nursing team focus on really getting to know the person and their family, delivering meaningful and individualised care to people living in their own homes and across the community.

Find out from our Community Dementia Nurses about what a day in their life is like and how our team of Community Dementia Nurses help our patients:

“When we step into a patient’s home, we can find families at a loss with what is happening to their loved one because they don’t know much about what dementia is,” says Trinity Community Dementia Nurse Joana.

We can help educate families or the carer about the disease, signpost them to mental health teams and be there on the end of the phone for those ‘help me-out-I-don’t-know-what-to-do’ calls when they need a supportive voice at the other end.

Spouses or family members often talk about their own emotions likened to those of someone grieving, maybe they don't recognise their loved one because they seem distant, or they aren’t acting or thinking in the way they used to.

The carer can be so busy caring that the actual relationship between family members or loved ones can get lost. There is an element to our work which can include helping heal elements of relationships. Helping people reconnect with their loved one is something we can work on together. Bringing them back in touch with each other again, so those feelings of “loss” disappear, and redeveloping those closer feelings is one aspect of our job.

Ways we help reconnect and redevelop those relationships include using sensory connectors such as giving a hand massage, listening to music together or setting new routines for people to do together. 

This particular role feels special because you really get to know the patient as a person. It’s not just about the disease that is dementia, but about who they are. When you go to their home, you get a feeling of how they live and the family as a whole. We take a lot of time in our work to really listen to what the patient really needs, and families tell us this makes a big difference.

For a person living with dementia as well as another serious or life-limiting illness, life can be very difficult. They may have difficulties communicating how they are, what they need or aspects of their health. Their mobility maybe poor and relationships with people around them may have changed.

marta and joana, 2 community dementia nurses standing in front of the hospice

Why are we here?

The Community Dementia team is here to support Trinity patients who have a diagnosis of dementia who are still living at home. Our work is split into two different areas across the area we serve – seeing patients north and south of the river.

In the last three years we have seen an increase in the number of people being referred to Trinity’s Community Dementia team for our help which we attribute to more professionals knowing about us and our great levels of care!

Our patients typically come to us through a GP referral or if they have ended up in hospital and need hospice help because of the complex make-up of their mental and physical health.

When we go to see a patient there is a lot we can do, we normally start with an assessment to see what specialist palliative care they might benefit from. But we also liaise closely with their GP and other community teams who may already be coming in to see them. 

Having conversations with the patient about their advance care plan is really important, giving them a chance to talk about their wishes, perhaps identifying who they would like to nominate as a next of kin or their lasting power of attorney.

The person we are seeing might not be able to speak as much as they used to before their illness, but we can try to find ways of working with them that is respectful, honest and essentially ethical when dealing with sensitive and complex issues. Noting their written wishes is one way we can do this. 

Read George’s story Find out more about Trinity's Community Dementia care