Priority 14 from the Palliative and end of life care PSP

UNCERTAINTY:  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?  (JLA PSP Priority 14)
Overall ranking 14
JLA question ID 0026/14
Evidence

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

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 http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0023274/  

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) http://www.asha.org/Members/ebp/compendium/reviews/Evidence-Based-Practice-Recommendations-for-Dementia--Educating-Caregivers-on-Alzheimer-s-Disea---.htm

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 

Ongoing 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 http://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12612001164886  

The effect of different models of facilitation when implementing the Gold Standards Framework in Care Homes (GSFCH): a cluster randomised control trial ISRCTN76029577
Health Research Classification System category  Generic
Extra information provided by this PSP
Original uncertainty examples 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 ?
Submitted by Patients x 1  ~  Professionals x 2 
Outcomes to be measured Health related quality of life, good death, Change in symptoms or change in management of symptoms, adverse effects or complications
PSP information
PSP unique ID 0026
PSP name Palliative and end of life care
Total number of uncertainties identified by this PSP. 83  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 21 November 2014