changing minds programme overview and update
TRANSCRIPT
Marie LynchHead of Healthcare Programmes
Living Well with Dementia
Conference
St Luke’s Home, Education
Centre
23 April 2015
Presentation Outline
• BACKGROUND• Irish Hospice Foundation
• Policy Context
• Rationale
• CHANGING MINDS PROJECTS• Resources
• Education
• Service Development
• Engagement
IHF Vision & Mission
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. 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
and Training
• Children's Programme
• Forum on End of Life
• Fundraising
Grant programmes
Population and Policy
41,000
140,000
Irelands dementia population trends
Good end of life care for people with
dementia
RATIONAL
E
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
RATIONAL
E
End of life care needs of
people with dementia
Care Transitions
Multidisciplinary team involvement
Pain &
other
Symptoms
Communication
Loss and
bereavement
RATIONAL
E
Presentation Outline
• BACKGROUND• Irish Hospice Foundation
• Policy Context
• Rationale
• CHANGING MINDS PROJECTS• Resources
• Education
• Service Development
• Engagement
2013 - 2016
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
Resources
staff
People with
dementia Families
RESOURCES - People with Dementia & Families
Resources - Families
A 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
dyingFor info:
RESOURCES– 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
Bereavement
Pain assessment
PALLIATIVE CARE AND DEMENTIA :
GUIDANCE DOCUMENTS – 2015/2016
1
Consultation process open 20 April – 1 May
EDUCATION
Education
Seminars
Training days
National Conference
EDUCATION / seminars
4 regional
seminars Limerick
Dundalk
Waterford
North East (Oct 2015)
1 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
18
For info:
19
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
EDUCATION / training days
Communicating with People with DementiaA new half-day workshop for staff working in residential care
For info:
Service development
Service development
Grants
Dying at home RCC/Journey
of Change
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 2014
Series 1 3 8 12 14 25 50 63 86
0
10
20
30
40
50
60
70
80
90
100
Axis
Tit
le
# people with dementia referred to IHF night nursing
service
SUPPORTING
HOME DEATHS
FOR PEOPLE WITH
DEMENTIA
Need to support residential care centres
meet end of life care needs of residents
and comply with regulations
Service Development/RCC
Onsite facilitation
Individual tailoring for
quality improvement
EOLC toolkit
Education
End of life reviews
Telephone support
End of life toolkit
Online learning and
support
Community links
Service Development / RCC
Target 350 Residential Care
Centres South, Dublin, MidWest & North
West
IHF South JOC Co-ordinator:
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
…more info on grants page of IHF website…
www.hospicefoundation.ie
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
ENGAGEMENT / public
4 Project Groups
Participation
Dissemination
REPRESENTATION:
Nursing, Medicine, Palliative
care, Intellectual Disability,
Patient Groups
Public meetings,
consultations, grant
funding, seminars,
briefings, workshops
Information leaflets,
communiques, website,
contact database
STRATEGIC
ENGAGEMENT
2013 2016
ENGAGEMENT / strategic partners/ sustainability
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
EVALUATION
LEAP
MODEL
IN
CONCLUSI
ON
Acknowledgements
Thank you and Questions
For more information
Marie Lynch
Ph: 01 673 0063
People with dementia and carers who have
contributed and advised IHF
IHF Changing Minds Team
Project Advisory and Governance Groups
Atlantic Philanthropies
References
• Givens, J. et al, Grief among family members of nursing home resident with
advanced dementia American J Geriatric Psychiatry (2011) 19:6
• Van Der Steen, J. et al, White paper defining optimal palliative care in older
people with dementia Palliative Medicine (2013)
• Illiffe, S. et al Modelling the landscape of palliative care for people with
dementia BMC Palliative Care 2013 12:30
• Hughes, J. What does palliative care mean and does dementia need it?
Alzheimer Australia Conference 2009
• Palliative Care and Dementia consensus in North Tyneside 2006