End of life care for people with Dementia

End of life care for people with Dementia Marie Lynch Head of Healthcare Programmes Rationale Challenges Opportunties The National Dementia Care Conference The Future Vision Of Dementia Care In Ireland March 2016

Irish Hospice Foundation Our Vision is that no one should face death or bereavement without the care and support they need Our Mission is to achieve dignity, comfort and choice for all people facing the end of life

Irish Hospice Foundation Programmes Bereavement Education & Research Healthcare Public Engagement

IHF Healthcare Programmes 43% die in Hospitals 25% die in Residential care HFH programme Journey of Change programme Dementia 70% die with diseases other than cancer Palliative care for all programme Primary palliative care programme 25% die at home

1. WHAT DO PEOPLE WITH DEMENTIA SAY ABOUT END OF LIFE CARE You go into the deepest grief that one can go into for the life you will never have. There's a huge pain for families and a huge pain for yourself in realising that life will never be as it was

What people with dementia say about end of life care: RONAN SMITH Plan for the probable, work for the possible, hope for the future Hope that people don t have to feel ashamed or awkward about a dementia diagnosis. life isn't over

What people with dementia say about end of life care: KATHY RYAN

What people with dementia say about end of life care Challenge not everyone wants to talk about it Their views may change need to check in Staff reluctant to have the conversation Staff need to adapt their communication styles to accommodate how the person with dementia communicates People with dementia need more information about future Opportunities Use natural opportunities Introduce visual cues Prompts and resources Continue to check in re preferences

PROMPTS and RESOURCES www.hospicefoundation.ie

2. WHAT ARE THE PALLIATIVE AND END OF LIFE CARE NEEDS OF PEOPLE WITH DEMENTIA RATIONALE How many people die with dementia Where people with dementia die Good end of life care for people with dementia CHALLENGES Service challenges What are education and training needs of staff

What are the palliative and end of life care needs of people with dementia In Ireland at least 4,200 (14%) people who die have dementia (based on UK stats)? Cause of death in Ireland CSO 2014? How many people die with dementia?where do people with dementia die

Where do people with dementia die? Home 5% Hospice 0% 55% of people die in Residential care (Murtagh et al 2012) Hospitals 40% Residential Care Centres 55% 40% people with dementia die in hospital (Sleeman et al 2014) 5% at Home. Rare across Europe with rates varying from 3.3% in Wales to 16.4% in Belgium (Houttekier et al 2010) Sleeman et al (2014)

What is palliative care for people with dementia? 16 Specialist service PHILOSOPHY OF CARE Recognition of anticipatory and ambiguous loss and bereavement people with dementia and families Planning for the future Recognition 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 & nutrition, medications, pain Support decision making re potentially burdensome interventions

Good end of life care for people with dementia Requires additional emphasis 1. Communication skills with people with dementia and families due to cognition, capacity, lack of diagnosis 2. Assessment of end of life symptoms 3. Wider MDT involvement due to diminishing ability to communicate and co-morbidities due to complex symptoms & range of specialist involvement 4. Increase in acute events/transitions for continuity of care transitions 5. Bereavement interventions Anticipatory and ambiguous grief and longer trajectory

End- of- life care needs of people with dementia Communication Loss and bereavement Pain & other Symptoms Multidisciplinary team involvement Care Transitions

Service Challenges in providing a Palliative Care Approach 20 PALLIATIVE CARE APPROACH All stages All settings Person with dementia, their family, service providers

Education needs of Staff to provide a Palliative Care Approach

3. HOW THE PALLIATIVE APPROACH CAN BE INCORPORATED AS PART OF ROUTINE CARE FOR PEOPLE WITH DEMENTIA AND THEIR FAMILIES Refer to existing education and resources 3 guidance documents Facilitating discussions on future and end of life care Advance care planning &Advance health care directives Loss and grief Underpinned by new Consent Policy and Ass Dec Mak Capacity Act

Education and Training http://hospicefoundation.ie/education-training-2/staff-training/

Guidance Documents 2: Advance care Planning 3: Loss and grief

Public Consultation in March

Advance Care Planning and people with dementia GUIDANCE DOCUMENT People with dementia can participate in the advance care planning process Advance care planning is a process - more than one discussion. Decisions recorded should be reviewed every three months. An ACP plan is a records of discussion in relation to a persons will and preferences about future care if they lose their capacity to speak for themselves. As well as clinical issues (CPR, Antibiotics), it can also cover environmental comforts, spiritual issues, place of care, holistic needs. Help family member know wishes and preferences Reduce anxiety for person with dementia and family Enables the person focus on living well It is a choice

Advance Healthcare Directive and people with dementia An advance healthcare directive is the only place where a person can record their request to refuse treatment - this is legally binding.

Public Consultation in March

Loss and Grief related to dementia. Loss and grief are fundamental parts of the dementia experience Staff need to consider how loss and grief they encounter at works affects them develop knowledge and understanding about loss and grief Recognise and respond to loss and grief when they encounter it Anticipatory loss Ambiguous loss Disenfranchised grief

Loss and Grief in Dementia Respond to loss and grief Supporting staff Supporting families Supporting people with dementia experiencing loss and grief

4. HOW PEOPLE WITH DEMENTIA CAN BE SUPPORTED TO DIE AT HOME 140 No. of dementia referrals 120 100 80 60 40 20 0 2007 2008 2009 2010 2011 2012 2013 2014 2015

Audit on Dementia Referrals Supplementary information gathered on 52 referrals of people with a diagnosis of dementia who were referred to the NNC service 2015 July - Dec: Demographics gender, age, address, living situation, length of time living with dementia, co-morbidities, presence of an ACP Length of time involved with SPCT Reason for referral Supports informal and formal Care in the home provided by family versus homecare packages/ other formal supports What are the key components of care which enable a person with dementia to die at home in Ireland?

74% female average age 81.3 Profile of people with dementia dying at home (N 52) 73% own home 23% family carer s home Many family members living in close proximity co-morbidities: 28% no other 19% had one 17% had 4 6% had 7+ 76% families providing 24hr care 50% of cases, plan in place to die at home.

Formal Supports PHN 77% GP 40% home visits Formal supports available to the person Homecare Packages 89% Supports from dementia specialists HCPs 31% OOH providers 61%

Conclusions Availability of family /friends to care appears to be a key determinant for people with dementia to remain at home Decision to die at home was made by the person with dementia with their families in over 50% of the sample Majority of sample referred to SPCT in their last week(s) of life for symptom control Access to formal supports and care packages varied

1. What do people with dementia say about end of life care 2. What are the palliative and end of life care needs of people with dementia 3. How the palliative approach can be incorporated as part of routine care for people with dementia and their families 4. Understanding how people with dementia can be supported to die at home Natural moments to plan for the future Loss and grief Future planning Symptom control Staff upskill to assess and communicate to adapt to changes Access to family, home care packages GP Home Visits Plan ahead

Still Kathy

Acknowledgements People with dementia and carers who have contributed and advised IHF IHF Changing Minds Team Project Advisory and Governance Groups Atlantic Philanthropies Queries More information For more information Marie Lynch Marie.lynch@hospicefoundation.ie Ph: 01 673 0063 www.hospicefoundation.ie Go to Palliative Care for All Page