Do you need specialist palliative care skills to support people with Dementia at the end of their lives? 18 th April 2018 The Met Hotel, Leeds Welcome & Introduction Penny Kirk Quality Improvement Manager Yorkshire & Humber Dementia Clinical Networks 2 1
Overview of numbers of deaths Table 2: The number of deaths with an underlying cause, contributory cause and a mention of dementia, England, 2001-2014 Dementia subtype Number Underlying cause Contributory cause Mention Percentage of deaths with an underlying cause of dementia Number Percentage of deaths with a contributory cause of dementia Number Percentage of deaths with a mention of dementia Alzheimer's disease 85,985 24% 40,268 13% 126,253 19% Vascular disease 37,010 10% 23,243 7% 60,253 9% Unspecified dementia 231,725 64% 253,796 81% 485,521 72% Other dementia subtypes 8,078 2% 6,089 2% 14,167 2% Dementia deaths (All 362,798 100% 313,388 100% 676,186 subtypes) 100% From 2001 to 2014, 5.5% of all deaths has an underlying cause of dementia recorded in their death record. Of these deaths with dementia, unspecified dementia represented the highest proportion (64%). (3.3% in 2001 and 10.7% in 2014) From 2001 to 2014, 10.3% of all deaths included a mention of dementia in the death record. In 2017, dementia was recorded on death certificates more frequently than any other underlying cause. 3 EOLC Dementia Typical end of life journey for Persons with Dementia (PwD) PwD dies in hospital PwD at home PwD in care home Health / Social crisis Emergency services PwD admitted to hospital PwD discharged from hospital Supported by Family carers Social carers Falls team District nurses GPs Admiral nurses Mental health services for older people Supported by Family carers Social carers Community matron District nurses Falls team GPs Mental health services for older people Examples Carer respite Carer breakdown Illness of carer UTIs Falls Dehydration Confusion Supported by Out of hours service NHS Direct Ambulance service GPs Supported by Rapid response team A&E staff Medical admissions staff Care of the elderly multidisciplinary team Supported by Care of the elderly multidisciplinary team Hospital matron Discharge team Social care assessors Community matron Adapted from: https://www.mariecurie.org.uk/globalassets/media/documents/commissioning-ourservices/past-initiatives/end-of-life-care-and-dementia/end-of-life-project-report.pdf 4 EOLC Dementia 2
Percentage Percentage Percentage Percentage Percentage Percentage Number of deaths Number of deaths A) 10,000 8,000 6,000 4,000 2,000 0 Underlying cause of death for PwD Figure 23: Number of deaths by underlying cause of death (Top 25 causes), deaths of people aged 65+, England, 2012-14 A) Deaths with a contributory cause of dementia B) Comparator: All deaths The profile of the underlying cause of death for people with dementia is markedly different from that for all deaths. B) 120,000 100,000 80,000 60,000 40,000 20,000 0 For people with dementia, the most common underlying causes of death were stroke, Parkinson s disease and heart disease. Of note, an underlying cause coded as a fall or exposure to an unspecified factor was present in the top 25 for deaths with dementia but not in the top 25 for all deaths. Note: For chart A, deaths with an underlying cause of dementia have been excluded from the chart; overall 136,649 deaths had an underlying cause of a dementia subtype in addition to a contributory cause of a dementia subtype. 5 EOLC Dementia 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Comparators: Place of death The proportion of deaths with an underlying cause of respiratory disease The with proportion or without of dementia deaths with as a an underlying cause of malignant canc contributory cause, by place of death and age, England, 2012-14 contributory cause, by place of death and age, Eng A) Respiratory disease B) Malignant cancer Contributory code of dementia No contributory code of dementia Contributory code of dementia No contributory code of dementia 100% 100% 100% Other Places 100% 90% 90% 90% 90% 80% 80% 80% 80% 70% 70% Hospice 70% 70% 60% 60% 60% 60% 50% 50% 50% 50% Home 40% 40% 40% 40% 30% 30% 30% 30% 20% 20% 20% Hospital acute or 20% 10% 10% community, 10% not 10% 0% 0% psychiatric) 0% 0% Care home (nursing or residential) The proportion Age of deaths group with an underlying cause Age of circulatory group Age group diseases with or without dementia as a Age group Note: Deaths in hospice contributory with a underlying cause, of respiratory by place disease of death and a and contributory age, England, 2012-14 code of dementia have been omitted due to small disclosive numbers. There is a marked difference between the profile for place of death for people with cancer with C) Circulatory disease more deaths occuring in care homes, less at home and in hospices. Contributory code of dementia Age group 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% No contributory code of dementia Age group Other Places Hospice Home Hospital acute or community, not psychiatric) Care home (nursing or residential) Having dementia in addition to one of the three major mortality groups changes the picture of place of death. With significantly more deaths in care homes and less at home. There is a marked difference between the profile for place of death for people with circulatory diseases with and without dementia. A higher proportion with dementia die in care homes across all age groups and fewer die at home. 6 EOLC Dementia 3
Place of death: Dementia & All deaths Deaths with a dementia mention (aged 20-64) Comparator: All deaths (20-64) 3% 6% 7% 3% 11% 17% 36% 45% The picture for place of death changes when deaths have a recorded mention of dementia. 39% Deaths with a dementia mention (aged 65+) 8% 1%1% 32% 58% 34% Comparator: All deaths (65+) 5%1% 25% 21% 49% For people aged 20 to 64 with dementia, the proportion of deaths that occur in hospitals is significantly higher in care homes and lower in hospitals and at home compared to all deaths in this age group. For people aged 65 and over with dementia, this difference is more pronounced, deaths are more likely to occur in care homes and less likely to occur in hospitals and at home compared to all deaths in this age group. 7 EOLC Dementia Maister Lodge & Dove House Hospice lessons learned Dr Anna Wolkowski, Chief Executive/Director of Clinical Services, Dove House Hospice, Hull Dr Emma Wolverson, Clinical Psychologist, Maister Lodge, Hull 8 4
Our services 9 Background October 2017 June 2018 Huge opportunity but lots of anxiety Attitudes survey Lunch and Learn (dementia theme) Increasing insight into each other Monthly catch ups / planning meetings Buddy systems Shared team day 10 5
End of Life Care at Maister Lodge Bill (78 years) Vascular dementia (BPSD) Type 2 Diabetes Hypertension Prostate, bladder and skin cancer Heart failure Hearing impairment History of chest infections COPD 11 End of Life Care at Maister Lodge Out of area / temporary registration Is this end of life? 2 meds cards Staff knowledge of end of life care meds and dosages 12 6
Dementia care at the hospice: Tony s story Complex needs/agitation/family distress/staff distress Environment Resources A different set of skills? Person centred information leading to person centred care Butterfly scheme 1-2-1 skills Ensuring people with dementia have equal access to hospice care means treating people with dementia differently. 13 14 7
Our lessons learned Modelling and side by side working Building confidence Shared decision making Shared passion commitment Relationships Environments matter 15 Access to hospice care The requirement is to proactively make the necessary relationships and, utilizing the variety of aids available, to interrogate current working practices and wherever possible to make the reasonable adjustments required to ensure an equal and equitable approach to end of life care for all those who need it..we should not develop services and approaches alone We need to gain everyone s confidence that we are coming out of our world to join the care staff in all settings that are trying very hard to care in complex situations (Hospice UK, 2015) 16 8
A pyramid of integration: specialist skills meeting complex needs Passion Kindness Love Exceptional person centred care Specialist palliative care skills Specialist dementia care skills 17 Helpful Resources & Key Messages Dr Sara Humphrey GP with a Special Interest in Older People-BTHFT Clinical Specialty Lead Older People & Stroke Bradford District & City CCGs GP Advisor, Dementia & OPMH Clinical Network 18 9
Guidelines for Healthcare Professionals: Symptom Management in End of Life Care for People with Dementia Published by the Yorks & Humber Dementia Clinical Network in November 2016 Based on work carried out in Leeds Available in two forms: Full 6-page guideline Single page summary Available to download from: http://www.yhscn.nhs.uk/media/pdfs/mhdn/dementia/documents%20and%20links/guidelin es%20for%20healthcare%20professionals%20final.pdf Intended to supplement the Guide to Symptom Management in Palliative Care, published June 2016, available here: http://www.yhscn.nhs.uk/media/pdfs/eol/key%20documents/yh%20palliative%20car e%20symptom%20guide%202016%20v2.pdf 19 20 10
Dementia: Advance Care Planning (ACP) 1 INPUT: NHS orgs, GP Dementia Leads/ CCGs, Trusts, Experts by experience, hospices, charities AIM: Resource to support the of f er of an ACP in all care settings THEMES: What good would look like; Faith / Religion and the ACP process; Liberty protection / DoLS and ACP https:///pu blication/my-future-wishesadvance-care-planning-acp-forpeople-with-dementia-in-allcare-settings/ 21 Who is it for? People with advanced dementia where death would not be unexpected within 12 months What should we do? Always consider consent and capacity Family discussion: take culture and religious beliefs into account Review the advance care plan with the team and family Involve other professionals Stop unnecessary medications and investigations Review any Advance Directive to Refuse Treatment, Lasting Power of Attorney Alternatives to drugs should be tried and maintained even if medication is required Basics check bowels, bladder, mouth care, pressure areas, infection Consider pain relief initially regular simple analgesia or transdermal if condition stable Remember delirium which is common and not always associated with identifiable infection Bereavement support End of life care in dementia Further reading: Delirium prevention - www.nice.org.uk/guidance/cg103; Management in end of life care for people with dementia - http://www.yhscn.nhs.uk/media/pdfs/ mhdn/dementia General guidance - NHS England Final wishes to be published soon; Gold Standards Framework - www.goldstandardsframework.org.uk; Why should we do it? Dementia is the leading cause of death A third of people who die, die with dementia Life expectancy of a person with dementia in a care home is the same as a woman with metastatic breast cancer The decline is slow and the features are non-specific, leading to diagnostic uncertainty Associated frailty and multi-morbidity are common Estimating prognosis is less helpful than predicting needs and ensuring care is in line with expressed preferences As dementia progresses medical interventions become gradually more intrusive and less beneficial. Transfer to hospital can be traumatic Agitation and restlessness may reflect limited ability to communicate How should we do it? Do not attempt resuscitation discussion and documentation Record next of kin contact details Provide anticipatory medication Advance care plan and handover form fully accessible for out of hours Document when hospital transfer is undesirable Add to palliative register for regular MDT review Note preferred place of death Provide phone number of local palliative care team 11
Who is this for? Agitation is common in dementia, particularly in the advanced stages It is sometimes referred to in the context of Behavioural and Psychological Symptoms of Dementia (BPSD). It is used to describe a number of symptoms and behaviours It can be associated with verbal and potentially physical aggression. Management of agitation in dementia What should we do? Why is it important? At home, it can cause significant distress to family and carers, often being a cause of admission to long term care In care homes, it can cause distress to care staff and other residents - a request for a prescription can follow. Agitation fluctuates not like cognition where there is an inevitable worsening, the natural history means that it can come and go Assessment Rule out physical illness/delirium Is there evidence of pain? Mental health - is there evidence of depression/psychosis? Consider the circumstances - ABC Antecedents what starts the behaviour (eg personal care). Behaviours what are the behaviours themselves (eg a retired prison warder going round the doors checking them). Consequences are there any reinforcing behaviours? Mild Moderate Severe Watchful waiting - consider non drug approaches explanation to staff, look at the environment, purposeful activities, life story work, various other things eg aromatherapy, music therapy, doll therapy All of the above plus, consider medication Trazodone sedative, 200mg a day Citalopram 20 mg a day for depression Sertraline 25 to 100 mg a day for depression Memantine 20 mg a day may be helpful Remember: start low and go slow *Consider referral for specialist advice especially if medication necessary * All of the above, and consider antipsychotics: Risperidone 0.25mg bd, Increasing to 2mg a day Olanzapine (2.5 mg to 10mg a day) Quetiapine (25mg up to 200mg a day) Review after one month Take care in people with Lewy body disease No evidence for valproate or carbamazepine Supporting end of life care conversations http://neleolcare. org/data/uploads /publications/diffi cultconversationsdementia- 1ncpc.pdf www.dyingmatters.org/sites/default/file s/user/leaflet%2011_web.pdf 12
https://www.scie.org.uk/demen tia/advanced-dementia-andend-of-life-care/end-of-lifecare/ 13