Three things you need to know about dementia and dying

A blog post written by Kirsty Carr, National Policy and Strategy Advisor, Dementia Australia

Dementia is a terminal illness. A fact that many of us are unaware of.
It is the leading cause of death among women and the second leading cause of death overall in Australia, with 37 Australians dying each day from dementia. But unlike other conditions, the life expectancy for someone with dementia can be 10 years or more, as the disease progresses.

Now I’m not saying this to scare you, far from it. This is an opportunity to talk about what dying well looks like for someone living with dementia. It’s an opportunity to talk about choice, dignity and respect at end-of-life.

The key is putting the person first. It is about helping them live their life as fully and comfortably as possible until death.

There are many considerations for a palliative approach to dementia, and here are three that I believe to be key.

Advance Care Planning
A person with dementia should be involved in conversations and decisions about their life and care as much as possible. To facilitate this, it’s important that advance care planning be done as soon as possible after the person has been diagnosed with dementia. This empowers people to have a say over the care they receive and the type of death they may have. They can express their desires and choices for the future before the disease progresses and their ability to make and communicate their decisions is harder, or in some cases, not possible.
 
Some tips to help decision making include:

• Providing clear explanations
• Avoiding medical jargon
• Minimising noise and distractions during conversations
• Narrowing options to avoid confusion

Pain management
Pain is often not recognised in people with dementia, so it’s important to observe any changes in the person’s behaviour. Pain can be expressed verbally, through body language, emotional responses, behaviours and physiological changes.
 
There should be an ongoing and systematic approach to recording, assessing and managing pain, such as the use of a dementia-specific pain tool. Coupled with insights from families or carers, this will help to best address pain in the person with dementia and relieve discomfort as soon as possible.
 
Pain relief medication is important. This should be based on prescribing guidelines and remembering the principles of good management and assessment to avoid unnecessary pain from inadequate control. However, it is also important to look at non-pharmacological pain relief strategies such as:

• Soothing touch or massage
• Music
• Repositioning
• Physical movement or exercise

These might help with pain relief while meeting the needs of the person. It’s about understanding the person and providing the pain management approach that is best for them in any moment.
 
Quality of life
Quality of life is so important. Just because a person is dying, doesn’t mean that life ends. A person with dementia can live well. It’s about maintaining wellbeing. It’s keeping them engaged in meaningful activities, connecting with community, friends and family.

It can be as easy as finding out from the person themselves, their family or carer what they love doing in life and creating situations for them to experience that joy. Things like:

• Listening to music
• Dancing
• Aromatherapy and complementary therapies
• Honouring religious or spiritual practices
• Engaging in physical activity such as walking
• Spending time in nature

Maybe it’s helping them remain connected through the use of communication aids so they can continue to engage with others, and creating dementia friendly environments to support them in day-to-day life.

These simple things can make the world of difference and have a positive impact on the mental, emotional and physical health of a person with dementia, including reducing anxiety and depression.
 
The aim of all of this is to give the person with dementia the best life possible, where suffering is addressed, and they are free from discomfort and distress. It is putting the person at the centre of their own care and acting in their best interests, while at the same time preparing them for a dignified death at the end-of-life.
 
Further Dementia Australia resources about Dementia and Palliative Care
Palliative Care and Dementia (4.84MB pdf)
Wresting with Dementia and Death
Models of Dementia Care: Person-centred, palliative and supportive





Kirsty Carr, National Policy and Strategy Advisor, Dementia Australia 

To learn more visit the palliAGED Evidence and Practice Centres to find high quality evidence-based information on cognitive issues in aged care.