Svuh slt sig study day july 2015
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Transcript of Svuh slt sig study day july 2015
Changing Minds: An Overview
SLT Dysphagia SIG study dayFriday 24th July
St Vincents HospitalSarah Cronin MSc BSc
MIASLTDementia Development
OfficerIrish Hospice Foundation
Presentation Outline BACKGROUND
• Irish Hospice Foundation• Policy Context • Rationale
CHANGING MINDS PROJECTS
• Resources• Education• Service Development • Engagement
IHF Vision & MissionOur 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. We do this by addressing, with our partners and the public, critical matters relating to death, dying and bereavement in Ireland
IHF Programmes
• Palliative Care for All
• Primary Palliative Care
• Hospice Friendly Hospitals
• Bereavement Education ,Training and Support
• Children's Programme
• Forum on End of Life • Fundraising
Education
Grant programmes
Innovation
Awareness raising
Advocacy
When I receive good end-of-life care…• I will be respected for who I am, and I will be at the centre of all decisions about my care. I will have confidence in the quality of the care provided to me.
• I will be prepared for what lies ahead.• I will have choice, where possible, in my preferred place of care and have the supports I need for a good death.
• I will have comfort and dignity in my care as death approaches.
• I will know that my family and those important to me will be supported and cared for after my death.
People with dementia – what the research tells us…
• Dementia is not recognised as a progressive/ terminal illness• Progression varies significantly from person to person• People with dementia less likely to be referred to Specialist
Palliative care • Less likely to be given pain relief• Palliative care needs poorly recognised and prioritised in
healthcare settings• Can be more likely to undergo burdensome treatments• Training , knowledge and education of staff working in
residential care settings with people with dementia requires an integrated an interdisciplinary approach (Cahill et al, 2012 :ASI and IHF, 2012)
End of life care needs of people with dementia
Care Transitions
Multidisciplinary team involvement
Pain & other
Symptoms
Communication
Loss and bereaveme
nt
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 Anticipated loss and longer trajectory
Challenges of providing a Palliative Care Approach
PALLIATIVE CARE APPROACH All stages
All settingsPerson with dementia, their family, service providers
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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 Support decision making re potentially
burdensome interventions
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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)
Components of Dementia Palliative Care (ASI& IHF, 2012)
Responsive Services
Life cycle approach
Person centred services
Building capacity
Timely Information
needs
Integrated care
pathways
Shared expertise
Making Informed Decisions
‘we thought it would be easier to manage if we’d talked about it in advance’
We were prepared for the situation that
hit us
I’m happy that mums wishes will be carried out and that its all so comfortable and that she is comfortable with it too’
Getting on with living
The thing is once you’ve
spoken about these things (as hard as it might be) you can put them away and
focus on enjoying things’
Peace of MindReducing Anxiety
BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS
Source: NCPC UK Difficult Conversations
Planning for emergencies
Knowing what to expect at the very end
I think I’d have been a better carer if I’d
had more information
There can be a lot of friction and some families can bicker – helpful to have someone help with discussions and making plans in advance
There was always someone I could
phone, for example with the syringe driver….
they reassured me
BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS
Source: NCPC UK Difficult Conversations
Summary Palliative care is part of dementia care and should begin at the time of diagnosis
Requires 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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Changing Minds: Three Outcomes
Palliative care for
people with dementia
will be prioritised in all care settings; and more
people will be
supported to die well at home
Better end of life care
in residential
care settings for
older people with a focus on
people with dementia
Increased public
awareness on death
and dying, with more
people including
those with dementia,
engaging in early
advance planning
Practice tools, service models,
primary palliative care
Adaptation of Hospice Friendly
Hospital resources, development and
education for residential settings
Roll out and adaptation of Think
Ahead
STRATEGIC ENGAGEMENT
Resources - FamiliesA new education programme of four 90-minute sessions, run over four consecutive weeks, for family members (relatives and friends) of residents. 1. When someone you care about
is in a nursing home 2. How to have a good visit with a
relative/friend with dementia 3. Family involvement in thinking
ahead and decision making in end-of-life care
4. When someone you love/know is dying
For info: [email protected]
Resources for Staff
Facilitating discussion on future and end of life care
Advance Care Planning and Advance Healthcare decisions
Medication management
Ethical decision making
Nutrition and Hydration
Loss and Grief in people with dementia and their carers
Pain assessment
PALLIATIVE CARE AND DEMENTIA : GUIDANCE DOCUMENTS – 2015/2016
Aim: to inform and guide healthcare staff initiating and facilitating discussions relating to future and end-of-life care with people who have dementia.
-5 key considerations which inform best practice in communicating with a person with dementia- 4 areas of guidance for staff
National Seminars
4 regional seminars
Limerick Dundalk
Waterford Mullingar 3 November
20151 National
Conference 2016
What Matters To Me
A one-day workshop which aims to improve end-of-life care in hospitals/residential care settings by enhancing communication skills so that staff at all levels are better able to engage in discussions with residents, throughout their time in the hospital/care home, about what is really important to them.
Workshop topics include:
• Applying the principles of a hospice approach • Understanding the issues of ongoing care after death • Identifying ways to improve communication in end-of-life care with residents and
families• Applying open and sensitive communication to end of life care.
Education: Training Days
33
For info: [email protected]
34
Workshop topics: End-of-life care, communication and
person-centredness Communication – what helps and
hinders The impact of dementia on
communication ability Models of dementia care and how to
communicate Tips and techniques for
communicating with people with dementia
Training Days
Communicating with People with DementiaA new half-day workshop for staff working in residential care
For info: [email protected]
Case studies understanding how to support people with dementia to live well and die at home
Analysis of those who receive IHF night nursing service
Service Development/ Dying at home
2007 2008 2009 2010 2011 2012 2013 20140
102030405060708090
100
# people with dementia referred to IHF night nurs-
ing service
Axis Title
SUPPORTING HOME DEATHS FOR PEOPLE WITH DEMENTIA
EOLC dementia pathway acute hospital
Good Neighbour scheme – advanced dementia
Communicating end of life and dementia residential care
Understanding the role of SPC in supporting dementia
TALKING MATS – speech and language therapist intervention
Case studies to understand how palliative care helps people with dementia live at home
Service Development/GRANTS
www.hospicefoundation.ie
Onsite facilitation Individual tailoring for quality improvement
EOLC toolkitEducationEnd of life reviews
Telephone support
End of life toolkitOnline learning and
supportCommunity links
Service Development / RCC
Target 350 Residential Care Centres
South, Dublin, MidWest & North West
Resources for Residential Care Centres
• End-of-Life Care Toolkit• Excellence in end-of-life care• End-of-life care policies, procedures
and guidelines• On admission to residential care• Communicating in end-of-life care• Assessment, care planning and
advance care planning• Supporting families• Recognising when a person is dying• Caring in the last days of life• Care after a person’s death• Supporting staff• Design and dignity
Resources cont’d• On-line support network
• E-bulletins• Webinars• Questions forum• Contact details
• End of life spiral symbol• Information booklets/leaflets• Workshops
Workshops• Creating a Vision for End-of-Life Care
• examine end of life, dying and death from a personal perspective, a client centred perspective and an organisational perspective.
• discuss, compare & contrast end of life, dying and death and associated organisational structures and processes in their centre; for residents with and without cognitive impairment/dementia.
• Compassionate End-of-Life (CEOL) Reviews• give staff the opportunity to review and reflect on care provided to a
resident who has died. • help staff recognise and honour what the team and individuals did well
and to look at ways in which care could be improved, at an individual level, a team level, and an organisational level.
• Change Management• give staff insight into change management principles and knowledge on
how to make successful change.• Apply a change management model to centre specific change projects
Think Ahead is an idea that came from people like you across Ireland. Regardless of your age, stage of life or level of health, it encourages you to:
THINK about how well those close to you would know or understand your wishes if a time came when you could not speak for yourself because of illness.
TALK about these wishes with those close to you and with professionals such as GP, solicitor, accountant.
TELL the most relevant people in your life about your wishes and record them so that they can be available if at some stage, for whatever reason, you are unable to speak for yourself.
RECORD AND REVIEW
Public Engagement
“ 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)
Acknowledgements
Thank you and QuestionsFor more information • Sarah Cronin• [email protected]
Ph: 01 6730067
People with dementia and carers who have contributed and advised IHF
IHF Changing Minds Team Project Advisory and Governance Groups Atlantic Philanthropies