Advance Care Planning

Advance Care Planning Dementia Rights vs Risk And Coronavirus

A presentation by Dr Sarah Russell RGN, Professional and Practice Development Facilitator, Dementia UK, at an Echo session in March 2020 - please click on the image to download the full presentation

Some useful links here too:  Dementia and Human Rights 

End of life care and human rights




18/04/2019 - Advance Care Planning in Dementia Webinar

Karen Harrison-Dening Advance Care Planning in Dementia Webinar - Karen Harrison-Dening

This webinar follows on from the Clinical Network’s Whole System event in March 2019 and is an opportunity to hear from Karen Harrison-Dening, Head of Research and Publications at Dementia UK.

Karen has over 40 years’ experience in dementia care in a variety of settings and contexts. For the past twelve years she has worked with Dementia UK and Admiral Nursing. She gained a PhD at University College London focusing on advance care planning and end-of-life care in dementia. She holds honorary academic positions at the Universities of Nottingham, Liverpool and De Montfort, Leicester.

Karen talks about Advance Care Planning in Dementia, including why it’s important, barriers in practice, issues for family carers and tips for enhancing communication.

You can Download Karen's Slides HERE



WYH ICS Advance Care Planning work stream

Download the data table from Alzheimers Society on Length of Stay for people living with dementia,  compared to control group



Dying Well

Guidelines for Healthcare Professionals: Symptom Management in End of Life Care for People with Dementia

These guidelines are intended to support Healthcare Professionals who do not specialise in dementia care to assess and manage symptoms likely to be present in people with dementia during the end of life stage.  They supplement the Guidelines for Symptom Management in Palliative Care available to download here by providing additional information specific to the assessment and management of people with dementia, delirium and/or other cognitive impairment.  

A single page visual summary of these guidelines is now available.  The summary is presented in a format which can be printed and displayed in clinical areas and consulting rooms as appropriate.  

My future wellbeing tool

Developed by Tees Esk and Wear Valleys NHS Foundation Trust the 'my future wellbeing tool' can be used to facilitate discussions with patients and carers about end of life. 


Clinical dementia rating (CDR) and Gold Standars Framework prognostic indicator guidance

Click here to access an electronic copy of the staging of the clinical dementia rating resource.

Click here for the GSF prognostic indicators guidance for clinicians to support earlier recognition of patients nearing the end of life. 


My Future Care Plan

These two care plan documents (originally developed in North East Lincolnshire and then adapted for use with North Lincolnshire) have been incorporated as part of a holistic assessment process and it is widely used within care homes in both areas.  The tool is for patients to fill in themselves where possible but families often find it useful to do together as do some Care Home staff. Lisa Revel, Strategic Lead for Palliative and End of Lide Care (NE Lincs) says, “This is a great tool for people to capture their wishes and has been well received by both the public and professionals”.


Key contact for the NE Lincs version is Lisa Revell, Strategic Lead for Palliative and End of Life Care (NE Lincs), Email: 

Key contact for N Lincs is Helen Mumby: Helen Mumby, Macmillan End of Life Lead Nurse, North Lincolnshire and Goole NHS Foundation Trust, Tel: 07917232631 or 01724 203781.


Advance Care Plan Booklet: Bradford 

Serious illness and ageing bring challenges that many prefer to avoid thinking about. At the same time many fear loss of control about decisions relating to our health care. Bradford has developed an advance care plan booklet to help people to think ahead and write down what matters to them. Writing preferences down help to ensure that anyone who provides care, carers or health professionals, tailors it according to individual wishes.



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