Helping someone with late-stage dementia

Marilyn Parfitt is a Marie Curie Senior Nurse in Carmarthenshire. She works alongside other local healthcare professionals and services to support people living with advanced dementia in their last year of life, and their families.

Here, she shares her experience of caring for people with late-stage dementia and what helps.

People with dementia often have difficulty expressing how they’re feeling, what they need or if something isn’t right.

Dementia is a term used to describe people who have a set of symptoms such as memory loss and other cognitive problems. These symptoms stem from damage to the structure and function of the brain, which is often caused by diseases such as Alzheimer’s. 

I’ve been in community psychiatric nursing for many years before joining Marie Curie three years ago. I understand how challenging it can be for people with advanced dementia to get the range of support they, and their families, might need.

That said, I think the needs of a person with dementia aren’t very different from people living with other terminal illnesses. They experience pain, breathlessness, anxiety and other symptoms common in people in the later stages of their illness.

But because people with dementia have difficulty processing information, holding a conversation and expressing how they’re feeling, what they need or if something isn’t right, it makes it harder for us to know how we can help them. 

“We help people to have a good quality of life, for as long as possible.”

As dementia is a progressive illness, medications are usually prescribed to help manage a person’s symptoms rather than addressing the illness itself.

Many of our patients are elderly and frail, and it’s not uncommon for them to have another underlying illness, such as cancer or heart disease, which can make meeting their needs more complex.

When someone has advanced dementia, we tend to focus on whatever we can do to maintain or improve their quality of life. And this usually means looking at what we can do to keep them free from pain and other symptoms, and that their family feels supported and knows what to expect as their loved one’s illness progresses.

“Giving the right support is possible if you know what people need.”

Whenever someone is referred to our nursing service, we’ll visit them at home, or in their care home, to assess what their immediate and future needs are.

We would ask their main carer lots of questions to find out how the person has been, look at all the medication they’re taking and services they’re getting, and use a pain assessment tool to see if they have any discomfort.

We also get to know their family to see how they’re coping, what’s difficult for them, and where they might need more support. When we understand the whole situation about the patient and their family, only then do we know how we can do our best to help.

I’ve realised that not everyone is aware of all the services they can benefit from. So it’s my job to make sure they are getting the right support that’s available to them by working with their GP, district nurse and community psychiatric nurse, as well as social care services and other charities.

“Looking after the whole family is a big part of our role.”

Family members often need that extra support, because caring for a loved one with advanced dementia can take its toll on people’s health and wellbeing. So a big part of what we do is looking out for the physical, social, emotional and financial needs of families we support.

When we tell them how important it is to have time for themselves, we help by arranging respite care so they can go out and do other things. Sometimes we refer them to carer support services in their community, or make sure they’re getting the carer allowance and other benefits they’re entitled to.

On most days, I find that just having the time to listen to people’s concerns, letting them to express their feelings and understanding what they’re going through can help greatly.

If you’re caring for someone living with dementia, here’s how to look after yourself too.

For information and support over the phone, you can also contact the Marie Curie Support Line on 0800 090 2309 to speak to our helpline advisers. It’s a free service to help you and your family.  

If you’re a healthcare professional, find out how you can make referrals to our nursing services.