PowerPoint Presentation

Sarah CroninDementia Development OfficerMSc BSc MIASLTPeople with dementia in hospital: addressing their palliative and end-of-life care needs

Acute hospitals network meeting12th November 2015

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Outline of WorkshopIHF ProgrammesDementia in Ireland Dementia in HospitalsPalliative Care and dementiaCommunication with the person with dementiaUpdate on IHF resources relating to dementia palliative care

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What are the challenges that arise in your workplace in providing palliative and end-of-life care for a person with dementia

Irish Hospice Foundation ProgrammesFinal Journeys, What Matters to MeSupporting FamiliesCommunicating with a person with dementia

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IHF Healthcare ProgrammesDementia ResidentialCommunity

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ContextLiving and dying well with dementia in Ireland:200120082011201320122014

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Setting the Scene: Dementia in Ireland

Of these people there are 4000 people under the age of 658

Dementia is one of the biggest global public health challenges facing our generation9

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Hospital admissions are distressing and disorienting and often associated with a sharp decline in the persons health and function. 1 in 12 people with dementia will die during a hospital admission.11

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Barbaras Story

So, how might people with dementia feel?Lost, confused, bewildered Where am I? What is this place? Why am I not at home? What is happening to me?Anxious, fearfulWhy are these people asking me questions? Why do I have to follow their rules? Why are they taking me away? What do they want from me?Sad, lonely, depressedWhen can I go back to live with my people again? Where are my family? Am I dying? Angry, frustratedWhy cant I have/do what I want? Why cant I remember? Why cant I find the words I need? Why cant they understand? Embarrassed, ashamed Why are they looking at me like that? I cant remember who that is I dont know what they mean Whats wrong with me?

As well as happy, content, amused, excited and all the other good emotions

5 mins

Following from the last slide (symptoms associated with dementia), just show the title of this and give people a chance to name some of the emotions they think people with dementia might feel If you have a flipchart to hand, make a note of them. If no flipchart, just reinforce the named emotions by repeating them back to the group.

Then disclose the list above.14

Experience of acute hospital environmentFor the person with dementia

For family /carers

For hospital staff caring for people with dementia

What could be done differently?

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People with dementia what the research tells usDementia is not recognised as a progressive/ life-limiting illnessProgression varies significantly from person to personPeople with dementia less likely to be referred to Specialist Palliative care Less likely to be given pain reliefPalliative care needs poorly recognised and prioritised in healthcare settingsCan be more likely to undergo burdensome treatmentsTraining , knowledge and education of staff working in care settings with people with dementia requires an integrated an interdisciplinary approach (Cahill et al, 2012 :ASI and IHF, 2012)

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End- of- life care needs of people with dementia

Care TransitionsMultidisciplinary team involvement Pain & other SymptomsCommunicationLoss and bereavement

Cancer care need for complex pain and symptom control and management in addition to addressing social , emotional and spiritual needs within a short timeframeProlonged trajectory towards death 6-8 years. Slow decline in last year of lifePain symptom burden comparable with that of a person with cancer Should a person experience unstable symptoms/ problems of high intensity/ complexity and/ or frequency as a consequence of dementia, then input from SPC is needed to ensure best possible outcomesCommunication Course of a persons illness may be punctuated by episodes of confusion, hallucinations and delusions and possible personality and / or behavioural changesRecognising dementias terminal nature has been associated with greater comfort for pts dying with dementia

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Good end of life care for people with dementia Requires additional emphasis

Communication skills with people with dementia and families due to cognition, capacity, lack of diagnosisAssessment of end of life symptoms due to diminishing ability to communicate and co-morbidities Wider MDT involvement due to complex symptoms & range of specialist involvement Increase in acute events/transitions for continuity of care transitions5. Bereavement interventions Anticipatory and ambiguous grief and longer trajectory

Dementia causes problems in areas which are key to planning for and ensuring a good death:Diminishing capacityDifficulty with communicationUncertainty re prognosisThis is compounded by professionals lacking skills and therefore people are not being referred to SPCTeams

Marie Curie did reports on living and dying well with dementia in 4 countries BarriersIdentification and PlanningInequity of accessPoor quality of care for people with dementia

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What does it involve? Palliative dementia care is that which actively treats distressing symptoms (physical and / or psychological/ emotional) to optimise Quality of Life of the person with dementia and their family knowing that the underlying cause cannot be cured (ACH, Australia, 2009).Supporting the person with dementia and family to:Address and relieve pain ,distress and discomfort associated with advancing dementia

Inviting them to participate in making decisions about future care needs and where it is best delivered.

The aspirational aim will always be to maintain personhood and to enable the person to live well. When, then, it comes to dying, the aim should be for death to occur with dignity, without suffering or distress; it having never been hastened or postponed in-keeping with the principles of palliative care (Hughes, 2013)

Dementia is unique as it is recommended that palliative care principles be introduced early in the disease trajectory when the person can meaningfully engage in discussions in their future care (BCFF, 2012)

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What is palliative care for people with dementia?

PHILOSOPHY OF CARERecognition of anticipatory and ambiguous loss and grief people with dementia and familiesPlanning for the futureRecognition of support that staff need to deliver quality end of life care Ascending level of specialisation approach, generalist, specialist

SERVICE INTERVENTION Assessment and treatment of pain & symptoms (under-detected in people with dementia)Advice re hydration & nutritionSupport decision making re potentially burdensome interventions

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Palliative care can be understood both as a set of principles that underpin an approach to care and as a type of service that is provided( National Dem strategy 2014) with ascending levels of specialities.

NAPC level 2 approach for majority of people and their families. Located in mainstream services and led by dementia experts with input from SPC as appropriate.20

Components of Dementia Palliative Care (ASI& IHF, 2012)

No of transfer docs being developed EOL cafre form, Gp out of hours handover form, National Rapid d/c guidance for people who wish to die at homeNeed for an integrated pathway through a variety of services and settings. Likely that PWD will have intermittent contact with health professionals and services at different points and these services do not often interact with one another.

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Challenges of providing a Palliative Care Approach

PALLIATIVE CARE APPROACH All stagesAll settingsPerson with dementia, their family, service providers22

RANGE OF SETTINGSRANGE OF MDT INVOLVMENTCONSTRUCT OF DEMENTIA SOCIAL, MEDICAL, PSYCHOLOGICAL, PHYSICAL, YOUNG ONSET

Philosophy of care and actual intervention

Big ask for recognition across all these settings and models of care22

EOLC for people with dementia in hospital8% of people with dementia died while in hospital6% were receiving EOLC or were being managed according to an EOLC pathway1 in 12 people with dementia admitted will die during that admission

Need for a coordinated PC approachAdvance care planningContinuity of care

Reasons for hospitalisations Reasons for hospitalisations of people with dementia at the end of their life (De-Korte Vernhoef, 2015)Somatic SymptomsPsychosocial problemsSocial Problems

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Dying with Dementia in HospitalThink about some of the pros/ benefits of dying in a hospital from a patient and family perspective?

Think about some of the cons?

How can staff help to provide support for families of dying patients on wards?CompetenceCompassionConversations

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Summary Palliative care is part of dementia care and should begin at the time of diagnosisRequires collaboration across teams and settingsTiming of intervention paced/guided by people with dementia KEY ISSUESPlanning and preparationNeed for continued supportRecognition of protracted lossesCatering for cultural and spiritual needsContinuity of careStaff training

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Good quality EOLC begins at time of diagnosis and is not confined to the end stage of the illness or at the time where the person is actively dying which makes dementia unique25

SUPPORTING PEOPLE WITH DEMENTIA

Communication in practiceIn reality, communication in any circumstance can easily go wrong. One of the biggest challenges in any interpersonal communication is making wrong or unchecked assumptions Common assumptions that have been made in the past about people with dementia include:Thats not my mother in there Theyre beyond reach, just an empty shell Their dependence makes them children againOnce theyre gone, theyre goneAll people with dementia are pretty much the sameThey dont or cant know what they wantTheir dementia is the single source of all their problems and behaviours 27

6 mins.

Communication, in reality, often goes wrong (its one of the most frequently-mentioned issues in business and management, so it can go wrong at all levels of organisation and society!).

Making assumptions is a common problem even if everything in the model (previous slide) goes well, wrong assumptions can make for very poor communication.

If appropriate, check with the group for what assumptions have been made in the past about residential care staff, or about carers?

Then show them some of the common assumptions that have been made about people with dementia. They may be able to add other false assumptions that are made about people with dementia.

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Seeing the person

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Key Considerations to Inform Good PracticeRecognise that communication is ALWAYS possible with a person with dementiaDevelop knowledge about the progression of dementia and key triggers for end-of-life care discussionsPlan future care to optimise comfortPromote personhood throughout the persons journeyRecord future wishes when they are expressed29

3 mins.

A reminder that, even with dementia, we are still ourselves (personhood). The disease is difficult enough - none of us want to be any more disempowered by how we are treated because we have the disease. Our personhood, our sense of self, can be unnecessarily diminished by others who might ignore us, move past us, disempower us, patronise us, make decisions for us, etc.

Full reference: Mozley, C.G., Huxley, P., Sutcliffe, C., Bagley, H, Burns, A., Huxley, P., & Cordingley, L. (1999). Not knowing here I am doesnt mean I dont know what I like: Cognitive impairment and quality of life responses in elderly people. International Journal of Geriatric 860 Psychiatry, 14, 776783.

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Dementia and emotional memory

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5 mins

Play the FreeDem video clip Can your memory go completely? Film is available from www.freedemliving.com (its the first video on the home page) or from vimeo (http://vimeo.com/77213313)

FreeDem Films were developed by the NEIL Programme at the Institute of Neuroscience, Trinity College, Dublin with support from GENIO. FreeDem Films aim to increase public and professional awareness around the important issues of memory loss and brain health while at the same time tackle the stigma and fear that can accompany a diagnosis of Alzheimer's disease and dementia in later life. Each film addresses a question relating to brain health or dementia that older people identified as important. While designed and scripted to be entertaining and engaging, each film is informed by and grounded in science and clinical evidence. We hope that you enjoy your FreeDem Films experience and share the films with your family and friends.

The key message in this video is that people retain an emotional memory. So it is worthwhile treating them with kindness and with care as this is what will be remembered. It can also be very good to remind family members of this too how many family members have finished a visit with their parent with dementia feeling as if the visit was pointless or, even worse, totally dispiriting because their parent couldnt remember who they were? Their parent can remember the feelings associated with the visit.

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8 Tips for Effective CommunicationAdopt a person centred approach to communicationConnect with the personConsider the communication environmentBe aware of your own communication style and approachUse active listeningUse simple languageFocus on one question at a timeClarify information and check for understanding

IHF resources

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Information leaflets for people with dementia

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Education

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Education and Training

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Dementia Programme -STAFF

2: Advance care Planning 3: Loss and griefDraft for consultation 4.11 .15Draft 1.2016

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Series of Fact Sheets accompanying guidance documents

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Going Forward.What one thing are you already doing well ?

What one thing can you do differently within your workplace in order to meet the palliative care needs of people with dementia?

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Professional carers will never fully understand the light and shade, the hope and despair and the frustration and joy of each family members relationship with a person who has dementia. The best they can do is develop in partnership with families a mutually agreed plan that includes the very best physical care, thoughtful and sensitive social support and emotional and spiritual space for each unique passing

(Hudson, 2003)

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Contact InformationSarah Cronin, Dementia Development Officer

sarah.cronin@hospicefoundation.ie

01-6730067

ReferencesACH (2009). Planning for Dementia Palliative Care. ACH Group Australia: MelbourneAfzal, N., Bahuagiar, K., Flood, J., Cosgrave, M. (2010). Quality of end-of-life care for dementia patients during acute hospital admission: a retrospective study in Ireland. General Hospital Psychiatry, 32(2): 141-146Cahill, S , OShea, E & Pierce, M. (2012) Creating Excellence in Dementia Care: A Research Review for Irelands National Dementia Strategy. Dublin: DSIDCDe Sin A & Manning M. (2010) National dementia education and awareness programme: evaluation of the pilot project. Dublin: Health Service Executive.DeSin, A, OShea, E., Timmons, S., McArdle, D., Gibbons, P, ONeill, D, Kennelly, S.P & Gallagher P (2014). Irish National Audit of Dementia Care in Acute Hospitals. Cork: National Audit of Dementia Care.ESRI (2010). Activity in Acute Public Hospitals in Ireland. Annual report 2009. Dublin: 2009

References

Hudson, R. (2003). Pastoral Perspectives and policy issues in residential aged care. Ministry , Society and Theology 17(1 &2):10-31.Hughes, J (2013). Models of Dementia Care: Person Centred, Palliative and Supportive: A discussion paper for Alzheimer's Australia on death and dementia. Paper 35. Nolan, L (2007) Caring for people with dementia in the acute setting: a study of nurses views. British Journal of Nursing 16(7)The Alzheimer Society of Ireland and The Irish Hospice Foundation (2012). Building Consensus for the Future: Report of the Feasibility Study on Palliative Care for People with Dementia. Dublin