Palliative Care

Palliative care is a multidisciplinary approach to care for people and their families who are facing problems associated with a life-threatening illness. Palliative care focuses on improving quality of life by preventing and relieving suffering from pain or other problems which might be physical, psychosocial, or spiritual in nature. [1]

People living with advanced dementia are likely to experience pain and distressing symptoms as they near the end of life. [2] Because they cannot communicate their needs, they often do not receive the pain or symptom relief they require. [3] They might also receive unnecessary treatments such as antibiotics for pneumonia or burdensome hospital transfers close to the end of life when it may be more appropriate to keep them comfortable. [2] There is increasing worldwide awareness that palliative care services need to expand to include people with dementia. [4]

 This summary focuses on the effect that conducting a palliative care symptom assessment has on symptom control and comfort in dying for people with advanced dementia. Advance care planning and case conferences involving people living with dementia are covered in separate evidence themes.

This evidence theme on palliative care interventions for people living with dementia summarises one of the key topics identified by a scoping review of dementia research. If you need more specific or comprehensive information on this topic, try using the PubMed search below.

We found four reviews examining the effect of palliative care needs assessment on symptom management and end-of-life outcomes for people with advanced dementia. [5-8] Across reviews, the findings were inconclusive for: 

• Symptom control [5-8]

• Transfers to hospice for specialist palliative care attention [6]
• Prescribing of pain medication [6]
• People dying in their place of choice. [6]

This means some studies reported benefits while others did not come to the same conclusion.  There was no evidence for improved comfort in dying after palliative care assessment. [5]

There are several reasons why these findings should be interpreted with caution:

• They are based on a very limited number of studies, especially in the home setting. [8]
• The reviews did not find any studies assessing pain reduction, possibly because there are too many pain assessment tools to choose from and little information on which are most reliable. [5]
• Studies assessed different outcomes, making comparison of findings difficult. [5, 8]

These problems are likely due to the challenges researchers face in trying to recruit this vulnerable population into their studies. [5]

• Carers and families are not always aware that dementia is a condition with no cure which will inevitably lead to death. Take the time to know the signs that indicate dementia is progressing. Communicate your thoughts to the team and discuss informing the person’s family so that they are prepared.
• Care workers can undertake professional learning about how dementia progresses over time using some of the resources suggested below. The CareSearch and PalliAGED resources on dementia at the end of life are good places to start. 
• People with advanced dementia will often have pain and symptoms they cannot communicate. Be watchful for signs and provide verbal and non-verbal reassurance that their needs have been understood and that you will work to meet them. 
• Check the RACGP Silver Book sections on Dementia and Palliative and end-of-life care for practical guidance on care issues. 

• Raise the subject of dementia progression with the person and their family early and gently return to it now and then. This approach can provide people with time to accept the life-limiting nature of the condition and prepare for the end of life.
• Support home and residential care staff to undertake training on palliative care for people with advanced dementia.
• Invite a specialist palliative care team to work with staff regularly to improve their ability to identify unmet palliative care needs. This might be in the form of a Palliative Care Needs Round. These are monthly staff triage meetings lasting an hour where staff discuss the needs of residents at greatest risk of dying or who have a high symptom burden. Download Palliative care needs rounds: The implementation guide for more information (University of Stirling and Calvary).   
• Consider purchasing the Australian Pain Society eBook ‘Pain in residential aged care facilities: Management strategies’, 2nd edition and downloading its accompanying toolkit (free).

1. World Health Organization. Palliative care: Key facts [Internet]. WHO; 2020 [updated 5 Aug 2020; cited 2022 May 28]. Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
2. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-38.
3. Achterberg W, Lautenbacher S, Husebo B, Erdal A, Herr K. Pain in dementia. Pain Rep. 2020;5(1):e803.
4. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197-209.
5. Walsh SC, Murphy E, Devane D, Sampson EL, Connolly S, Carney P, et al. Palliative care interventions in advanced dementia. Cochrane Database Syst Rev. 2021;9:CD011513.
6. Candy B, Elliott M, Moore K, Vickerstaff V, Sampson E, Jones L. UK quality statements on end of life care in dementia: A systematic review of research evidence. BMC Palliat Care. 2015;14:51.
7. Hines S, McCrow J, Abbey J, Foottit J, Wilson J, Franklin S, et al. The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: A systematic review. JBI Libr Syst Rev. 2011;9(26):960-1131.
8. Miranda R, Bunn F, Lynch J, Van den Block L, Goodman C. Palliative care for people with dementia living at home: A systematic review of interventions. Palliat Med. 2019;33(7):726-42.