Walsh SC, Murphy E, Devane D, Sampson EL, Connolly S, Carney P, O'Shea E. Palliative care interventions in advanced dementia. Cochrane Database of Systematic Reviews. 2021, Issue 9. Art. No.: CD011513. DOI: 10.1002/14651858.CD011513.pub3.

Picture this…

Anne is 85 years old and is living with advanced dementia. She was diagnosed several years ago and moved into a specialised long-term facility about two years ago. Over the past twelve months, Anne has experienced a steeper decline in her ability to move. She is now confined to a bed, unable to communicate and totally dependent on others for all basic activities of daily living. She has also developed a pneumonia and her general health has rapidly gotten worse. Her family are worried that she might be suffering and in pain.

Summary messages –

• Adapting how palliative care for people with advanced dementia is organised and delivered may increase comfort at the end-of-life.
• Supporting the person with dementia and their family to plan their package of care possibly increases the chances that they will have a written advance care plan, and that this has been discussed with their healthcare providers.
• Existing research does not offer clear evidence on how palliative care can better support people with advanced dementia or their family.

What the research says –

Dementia is a progressive and incurable disease. Its later stages comprise severe memory deficits, eating problems and urinary and faecal incontinence. People with advanced dementia also become unable to communicate verbally, walk and perform activities of daily living independently. They also become more frail and have a greater risk of developing infections.

Palliative care is a specific way of caring for people who are going through the terminal stages of diseases that cannot be cured.  Reducing pain, managing other distressing symptoms, and guaranteeing comfort are the main aims of palliative care.  Although this type of care is often used with people with terminal cancer, it is less common among people with advanced dementia.

In this Cochrane systematic review, the authors wanted to check whether palliative care helps people with advanced dementia or helps their carers or family.   For that purpose, they examined data from nine studies involving 2122 participants from the USA, Canada, the UK, and other European countries.

The review team found that adjusting the way care for people with advanced dementia is organised and delivered may increase comfort in dying. These changes also make it more likely that a plan of care (advanced care plan) is defined. However, making these changes appears to have little or no effect on whether healthcare professionals, people with dementia, and their families discuss the type of palliative care that people with advanced dementia would like to receive.

Facilitating advance planning of care by the person with dementia and their family makes it more likely that they will have a written document with instructions on palliative care, and that they have discussed this topic with healthcare professionals.  This may also result in slightly more agreement between the person´s and the healthcare professional´s care goals.  Nevertheless, it may not change how family members feel about the management of symptoms.

The authors concluded that these findings were uncertain. There is little research focusing on this topic, and more high-quality studies are needed to establish how palliative care can help people with advanced dementia and their carers or family.

Where is Anne now…

When Anne was first diagnosed with dementia, she planned the type of treatments that she would want to receive. This process was decided together with her healthcare team and family and included written instructions on end-of-life care. Over the past few weeks Anne´s overall condition deteriorated significantly, with her medical team confirming that she had entered the terminal stage of her condition. Because an advanced care plan had been discussed, her family were able to request that this plan was delivered. Anne started receiving her tailored palliative care and the family could see she was no longer in pain. 

Monserrat Conde

Co-director and Field Executive of Cochrane Campbell Global Ageing Partnership

Please note: The stories and pictures used do not represent specific individuals – they are merely utilised to contextualise the data into a more digestible format.

Reference points

Walsh SC, Murphy E, Devane D, Sampson EL, Connolly S, Carney P, O'Shea E. Palliative care interventions in advanced dementia. Cochrane Database of Systematic Reviews 2021, Issue 9. Art. No.: CD011513. DOI: 10.1002/14651858.CD011513.pub3

If  you have any comments regarding this blog post, please contact us at  globalageing@cochrane.org.   We would love to hear your thoughts and answer any questions you may have. 

Web editor: Monserrat Conde