What is the best way to give palliative care to patients with dementia and their carers and families? This includes communicating about their diagnosis when they are being cared for at home or elsewhere?

Record type Uncertainties identified from clinicians' questions
Source James Lind Alliance Palliative and end of life care Priority Setting Partnership
Why is there uncertainty? Existing relevant systematic reviews are not up-to-date

Original Uncertainty

Ranked 15th in the PeolcPSP prioritisation

This uncertainty was identified from a patient's and two professional's question.

This is an indicative uncertainty and the following submissions were merged to form this one:
What support is there for younger patients with lewy body dementia in the latter stages at the moment its hard to find support especially in scotland
What care is there available for elderly dementia people who need constant supervision but are not violent who do not want to go into an institution or even a day centre but want to stay in their own home.
End of life care for those with dementia and their carers is fraught with difficulty. Why does getting cancer mean that continuing healthcare funding applies yet dementia does not qualify ?

References to reliable up-to-date systematic reviews:

Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, Howel D, Exley C. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age and Ageing.2012;41(2):263?269 PMID: 22156555

What is needed? Updating existing systematic reviews
Systematic reviews that need updating or extending Mahendra N, Hopper T, Bayles K A, Azuma T, Cleary S, Kim E. Evidence?based practice recommendations for working with individuals with dementia: Montessori?based interventions. Journal of Medical Speech?Language Pathology.2006;14(1):xv?xxv [See web page] Zientz J, Rackley A, Chapman S B, Hopper T, Mahendra N, Kim E S, Cleary S. Evidence?based practice recommendations for dementia: educating caregivers on Alzheimer's disease and training communication strategies. Journal of Medical Speech?Language Pathology.2007;15(1) [See web page] Emmelyne Vasse, Myrra Vernooij-Dassen, Anouk Spijker, Marcel Olde Rikkert and Raymond Koopmans (2010). A systematic review of communication strategies for people with dementia in residential and nursing homes. International Psychogeriatrics, 22, pp 189-200. doi: 10.1017/S1041610209990615 [See web page]
Systematic reviews in preparation None identified
Ongoing controlled trials Promoting Informed Decision Making and Effective Communication Through Advance Care Planning for People With Dementia and Their Family Carers NCT02211287 Cluster randomised controlled trial of facilitated case conferencing versus usual care for improving end of life outcomes in aged care residents with advanced dementia and their families [See web page] The effect of different models of facilitation when implementing the Gold Standards Framework in Care Homes (GSFCH): a cluster randomised control trial ISRCTN76029577


Which health conditions? Mental health | Dementia | Service delivery, organisation and staffing | Palliative and end of life care
What is person's age? Adult
Which types of treatments? Mixed or complex

Which Outcomes

Health related quality of life, good death, Change in symptoms or change in management of symptoms, adverse effects or complications

Record ID: Publication date:08 Sep 2015
Last reviewed date:08 Sep 2016 Publication Type:Known Uncertainty
The DUETs team endeavours to ensure that information is correct at the time of data entry