end of life care for people with dementia
TRANSCRIPT
The National Dementia Care Conference The Future Vision Of Dementia Care In Ireland
March 2016
End of life care for people with Dementia
Rationale Challenges
Opportunties Marie LynchHead of Healthcare Programmes
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
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
• 25% die at home
• 70% die with diseases other than cancer
• 25% die in Residential care
• 43% die in Hospitals
HFH program
me
Journey of
Change program
me
Primary palliative
care program
me
Palliative care for
all program
me
Dementia
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
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 RESOURCESwww.hospicefoundation.ie
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
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 ? How many people die with dementia ?Where do people with dementia die
CSO 2014
Where do people with dementia die?• 55% of people die in Residential care (Murtagh et al 2012)
• 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)
Residential Care Centres
55%
Hospitals40%
Home5%
Hospice0%
What is palliative care for people with dementia?
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
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Specialist service
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 due to diminishing ability to communicate and co-morbidities
3. Wider MDT involvement 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
Care Transitions
Multidisciplinary team involvement
Pain & other
Symptoms
Communication
Loss and bereaveme
nt
Service Challenges in providing a Palliative Care Approach
PALLIATIVE CARE APPROACH All stages
All settingsPerson with dementia, their family, service providers
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Education needs of Staff to provide a Palliative Care Approach
2: Advance care Planning
3: Loss and grief
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
3. HOW THE PALLIATIVE APPROACH CAN BE INCORPORATED AS PART OF ROUTINE CARE FOR PEOPLE WITH DEMENTIA AND THEIR FAMILIES
• Use IHF existing education and resources
• Introduce content of 3 guidance documents • Facilitating discussions on future and end of life care• Advance care planning &Advance health care directives• Loss and grief
Underpinned by HSE Consent Policy and Ass Dec Mak Capacity Act
Education and Training http://hospicefoundation.ie/education-training-2/staff-training/
Guidance Documents2: Advance care Planning
3: Loss and grief
May 2016
Public Consultation in March
Advance Care Planning and people with dementia GUIDANCE DOCUMENT • It is a choice
• 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 record 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
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.
www.hospicefoundation.ie
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
Ambiguous loss
Disenfranchised grief
Anticipatory loss
Loss and Grief in Dementia
Supporting people with dementia
experiencing loss and grief
Supporting
families
Supporting staff
Respond to loss and grief
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
4. HOW PEOPLE WITH DEMENTIA CAN BE SUPPORTED TO DIE AT HOME
0
20
40
60
80
100
120
140
2007 2008 2009 2010 2011 2012 2013 2014 2015
No. of dementia referrals
Audit on Dementia ReferralsSupplementary 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?
Profile of people with dementia dying at home (N 52)
• 74% female• average age 81.3• 73% own home – 23% family carer’s home • Many family members living in close proximity• 76% families providing 24hr care
co-morbidities: • 28% no other• 19% had one• 17% had 4 • 6% had 7+
plan in place • 50% of cases, had plan in place to die at home.
Formal Supports
Formal supports available to the
person
GP – 40% home visits
Homecare Packages
89%
OOH providers
61%
HCPs31%
PHN77%
Supports from dementia specialists
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
Its good to talkUse natural moments Individual approach
Loss and griefFuture planning
Symptom control
Staff upskill to assess and
communicate to adapt to changesAccess to family,
home care packages
GP Home VisitsPlan ahead
Acknowledgements
More information For more information Marie [email protected]
Ph: 01 673 0063www.hospicefoundation.ie Go to Palliative Care for All Page
People with dementia and carers who have contributed and advised IHF
IHF Changing Minds Team
Project Advisory and Governance Groups
Atlantic Philanthropies
Queries
Still Kathy