Karen Harrison

A Community of Practice: Dementia, Palliative & End of Life Care

Dr Karen Harrison Dening Head of Research & EvaluationHonorary Research Associate, University of LiverpoolHonorary Assistant Professor, University of Nottingham

Member of INTERDEM

Aims for this presentation

• Why is such a community of practice important

• Dying with and from dementia

• Setting up the community of practice

• Plans for the future

Dementia - demographics

1 – 2 - 3

Over 700,000 people living with dementia in England (www.alzheimersresearch.org/)

30% of over 60 year old will die with or from dementia (Brayne et al, 2006)

Alzheimer’s leading cause of death in females (13.4% of all female deaths).

(ONS: http://www.ons.gov.uk/ons/)

Dying with dementia

People with dementia, particularly those in the advanced stages, may experience poor end of life care:

May not be perceived as a terminal illness – despite the fact they are often bed bound, doubly incontinent and unable to communicate.

(Sampson et al 2011)

More likely to die in the acute hospital (47%)Over half will have 2 and 5 admissions in their last year of life.Less likely to receive hospice or palliative careLess likely to have their spiritual needs considered when they die

(Sampson et al, 2006)

Dying with dementia

There is often a failure of stakeholders to work together (Harrison Dening et al 2011, Ryan et al 2012)

A poor knowledge understanding of dementia and particularly end of life in dementia in generalist practitioners.

(Thuné-Boyle et al 2010; Brazil et al 2015)

Health and social care services may not be optimally configured to meet their complex needs.

Drivers within Dementia UK and Hospice UK

Dementia UK

Special interest group in Admiral Nursing focusing on palliative and end of life care in dementia.

Relationship centred approach to supporting families.

Identifying practice development needs of Admiral Nurses.

Strengthening relationships across colleagues in palliative care.

Consultancy and support of generalists.

Hospice UK

Established the Commission into the Future of Hospice Care (2013) to explore key challenges facing hospices.

Broadened scope to include non-malignant diseases, e.g. dementia.

Heads together….

How can Dementia UK and Hospice UK develop a community of practice to support knowledge sharing and transfer between the two specialties?

Inaugural meeting

Nominal Group Technique (Delebecq & Van Den Ven 1971)

Five stages

1. Generating ideas

2. Discussion

3. Further generation of ideas

4. Discussion and generation of themes

5. Ranking/prioritisation (Harrison Dening & Cooper 2016)

Results

15 themes generated in total

Top 5 ranking:

Communication

Pain assessment and management

Understanding issues for care in different settings

Education of the wider team (cascade)

How to influence local policy and strategy

Communication

“.…difficult conversations….how to communicate.…for the distressed person with dementia who is unable to cooperate…”

“….not straight forward [in dementia]….everyone is different….”

“….not just communication with the person with dementia but their carer too….”

Pain assessment & management

“.…[need]….to understand how to assess and manage pain….”

“….pain management should be a part of care management for distress behaviours….”

“….pain education….not just seeing agitation and treating agitation….”

Dementia care in different settings

“.…there needs to be a shared ethos between hospices and care homes….and what each can offer….”

“….do we have enough staff….do people with dementia need more staff [to care for them]….”

Educating the wider team

“.…we each know what we know but how do we get to know what we don’t know….?”

“….[more people with dementia]….are expected to come to our hospice but how can I support the staff educational needs when I am not an expert in this….?”

Influencing local policy and strategy

“….[I want to understand]….ways to get management, clinical commissioning groups on board….”

“….[I want]…. training in effective business case preparation….[making a case for people with dementia to access hospice]….”

“….[I]….would like dementia to be a seriously funded and thought about as cancer….”

What next?

Increase the numbers (per annum) of CoP meetings.

A network for clinical and practical questions and queries.

Plans to develop a page on both websites to support the knowledge transfer and draw practitioners attention to key events, meetings, policies and research publications.

Develop an evaluation plan to measure the impact, outcomes and outputs of the CoP.

Growing interest in the CoP from other areas and countries.

Impact & Outputs to Date

• Three CoP meetings (6 monthly)

• 180 members and growing (70/30% split)

• Positively evaluated by members

• Three publications/blogs

– Harrison Dening, K. (2016) Palliative and end of life care in dementia: A community of practice approach. Journal of Dementia Care. 24(3): 17-19.

– Harrison Dening, K. & Cooper, M. (2016) Dementia Special Interest Group: Shared learning across dementia, palliative and end-of-life care domains. EoL Journal BMJ, 6:1 e000018

– Taylor, R (2016) eHospice News https://www.hospiceuk.org/docs/default-source/What-We-

Can-Offer/Care-Support-Programmes/dementia-network/Summary-from-meeting-on-22-june?pdf?sfvrsn=2

• 1 conference abstract submission

– EAPC 2017, Madrid

Next CoP

Thank you for listening

17/11/2016

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