Ireland’s first
National Dementia Strategy
Our Hopes for the National Dementia Strategy
Aims of Presentation
The Context: Towards a Strategy and the role of ASI
The Process: Drafting the strategy and the role of ASI
The Strategy: Content of the NDS
THE CONTEXT
Dementia, an international political and health priority
“More than 35 million people worldwide, a
number that is expected to almost double
every 20 years”
(G8 Dementia Summit)
“By 2040, as many developed countries’
populations get older, neurodegenerative
diseases such as Alzheimer’s and other
causes of dementia and conditions, such as
Parkinson’s disease and amyotrophic lateral
sclerosis (ALS), will overtake cancer to
become the second leading cause of death
after cardiovascular diseases”
(World Health Organisation)
CONTEXT cont....
- Driven by changing demographics and the economic cost of dementia
- Paris Declaration 2006
- European Parliament (EP) 2011 European Initiative on Alzheimer’s
disease and other dementias
- European Parliament calls for dementia to be made an EU health
priority
- WHO - World Health Organization and Alzheimer’s Disease
International (2012) ‘Dementia: a public health priority’
- G8 Dementia Summit 2013
Dementia Strategy (2009) and Dementia Challenge (2012)
•
The Challenge’s efforts have increased dementia diagnoses by 10 percent in the first year of the project)
Dementia strategies Europe 2013
The Context (2): Ireland
Action Plan for Dementia (O’Shea and O’Reilly, 1999)
2011 election campaign included a clear ask for Government to
make a dementia strategy a priority
The Programme for Government 2011-2016 Commitment
“We will develop a national Alzheimer’s and
other dementias strategy by 2013 to increase
awareness, ensure early diagnosis and
intervention, and development of enhanced
community based services. This strategy will
be implemented over five years.”
THE PROCESS
The Process: Role of the ASI
- Become a friend of Dementia, 2011 (general
election)
-General election campaign:
•staff played key role - election materials included
voter prompt cards, candidate pledge cards and an
information poster.
•Materials were distributed across ASI services to
staff, supporters, volunteers and family carers.
- Alzheimer pledge, 2012 – Towards a National
Dementia Strategy
- Pre-budget submission and politicians prompt card
-ASI submission
- The campaign succeeded in securing a
commitment in the Programme for Government to
the development of a national dementia strategy by
2013
The Process: Evidence and Consultation
Developing the evidence base
Consultation and submissions
Working Group and Terms of Reference
The Process: NDS Working Group
Working Group membership range of clinicians, academics,
researchers, HSE staff, and the ASI
ASI priority input to NDS Working Group
 Ensure the voice of person with dementia and carers is at the
table (Irish Dementia Working Group and NDS Working Group
Roundtable; Carers and NDS Working Group Roundtable)
 Listen to voices of other key stakeholders through two
clinicians roundtables
The Process: Irish Dementia Working Group (IDWG)
Voice of person with dementia and carers is at the table
Background to the IDWG
THE STRATEGY
Dementia and Palliative care
As part of Palliative Care for All – 2
significant pieces of work on
dementia evolved
‘Opening Conversations’ was a smallscale qualitative research project model of best-practice palliative care
interventions for people with
dementia and
Report - Building Consensus for the
Future: Report of the Feasibility
Study on Palliative Care for People
with Dementia, Irish Hospice and The
Alzheimer Society of Ireland
The Strategy (1)
Principles to underpin care and support for people with dementia:
• Take account of dementia in the development and implementation of
existing and future health policies
• People with dementia should be encouraged to participate in society and
in their own communities as fully as possible for as long as possible
• End-of-life care for those with dementia should be prioritise and
provided in the most appropriate setting
• All those caring for or providing services to people with dementia should
be appropriately trained and supervised
• Resources should be directed to provide the best possible outcome for
those with dementia and for their families and carers
End of life and palliative care
A Feasibility Study carried out jointly by the Irish Hospice Foundation and the
Alzheimer Society of Ireland concludes that palliative care should not only
be considered as having a role at end-of-life, but that it extends from point
of diagnosis through the trajectory of the illness, to end-of-life and
bereavement support for family members. It was considered that this
approach would provide people with dementia with opportunities to plan
their future care needs and address any fears and apprehensions they may
have as their disease progresses. The inclusion of palliative care principles
in services for people with more advanced dementia will help staff in these
services to communicate, support and manage a spectrum of care issues
ranging from advance care planning to decision making regarding clinical
interventions and to specific ethical dilemmas that present for people with
dementia and their families.
Key principle in the NDS: Regular assessments of palliative care need should be
conducted by staff providing care to people with dementia. Staff should
have the training in the principles of palliative care needed to assess
palliative care need, and referral should be made to specialist palliative care
services to support care provision where required. People with dementia
should be supported to be cared for in the place of their choice, as far as is
possible, including at the end of life.
The Strategy (2)
6 Priority Areas
Better
Timely
Integrated
Training and Research and
Awareness
Diagnosis and
services,
Education Information
and
Intervention supports and
Systems
Understanding
care for people
with dementia
and their
carers
Leadership
Priority Area: INTEGRATED SERVICES, SUPPORTS AND
CARE FOR PEOPLE WITH DEMENTIA AND THEIR CARERS
3 Key objectives here is :
Better co-ordination, integration and smoother transitions between
primary, secondary, mental health, community care, acute, long
term and palliative care services.
Staff in all care settings should have the necessary training for treating
and supporting a person with dementia, including training in
palliative approaches that are appropriate for people with
dementia.
People with dementia should be facilitated and supported to live and
die well in their chosen environment including their own home or
nursing home if that is their choice. Specialist palliative care should
be available to all people with dementia and their families in all care
settings and at home, if required, to optimise quality of life and
support a comfortable and dignified death
Better Awareness and Understanding
• HSE to implement public awareness and health promotion
measures to:
•
•
•
•
Provide a better understanding of dementia in society
Reduce stigma
Target populations particularly at risk
Support the implementation of the governments healthy Ireland
framework
• Implement the national phsyiscal activity strategy
• DoH and HSE to promote a better understanding of dementia
among staff of frontline public services
Timely Diagnosis and Intervention
• HSE to develop material for GPs
• dementia reference material
• on care pathways to investigation and diagnosis
• Info on health and social support in the community
• HSE to develop guidance material on the appropriate management
of medication
• Modifiable lifestyle risk factors to be included in care plans
• HSE to review existing service arrangements to maximise GP and
acute hospital clinicians’ access to specialist assessment and
diagnosis of dementia
Timely Diagnosis and Intervention – additional actions
- HSE implement the national consent policy
- HSE to promote awareness of the Assisted Decision Making
(Capacity) Bill, when enacted and support people with
dementia to participate in all decisions that affect them
- HSE to consider the provision of Dementia Advisers on the
basis of the experience of a number of demonstrator sites
- HSE to examine the issues arising regarding the assessment
of people with Down Syndrome and other types of
intellectual disability
Integrated services, supports and care for people with
dementia and their carers
•
HSE to critically review health and personal social services for
people with dementia
• HSE to consider how best to use existing resources for home care
packages and respite care and improve the supports available for
carers to facilitate people to live at home
• HSE to evaluate the potential of assistive technology to support
carers and people with dementia
• HSE to ensure information on how to access advocacy services,
voluntary organisations and other support services is routinely
given to people with dementia and their families/carers
Additional actions
DoH to formulate proposals and timelines for the regulation of home and community care services for people
with dementia
HSE to ensure the use of the carer assessment component of the Single Assessment Tool
HSE to develop and implement a dementia and delirium care pathway
HSE to assign a senior clinician within each hospital to lead the development, implementation and monitoring of
the pathway
Hospitals to ensure dementia specific care pathways through Emergency Departments and Acute Medical Units
HSE to develop guidelines on dementia-friendly ward specification for the design stage of all refurbishments and
new builds
Hospitals to prioritise the assessment of social and environmental supports to meet the needs of people with
dementia and their carers
HSE to work to maximise the implementation of national policy ‘Towards a Restraint Free Environment in
Nursing Homes’
Where a person with dementia needs acute admission to a psychiatric
unit, every effort will be made to secure placement to a suitable old age psychiatry unit
HSE to examine a range of appropriate long-term care options to accommodate
the diverse needs of people with dementia,
Training and Education
• HSE to encourage and facilitate the provision of dementia-specific
training, including continuous professional development, to
relevant occupational and professional groups, including peer-led
support and education for GPs and to staff of nursing homes.
Additional action:
• HSE to develop appropriate training courses for family and other
informal carers in keeping with priorities highlighted in the National
Educational Needs Analysis completed by the HSE in 2009 and
Dementia Skills Elevator 2014.
Research and Information Systems
Additional action:
• HSE to ensure data from the Single Assessment Tool is factored into
research to inform dementia care in Ireland
• HSE to take measures to ensure appropriate recording and coding
of dementia in primary care and the development of practice-based
dementia registers
• Hospitals to take measures to encourage better recording and
coding of a primary or secondary diagnosis of dementia in hospital
records and ensure relevant information is captured on HIPE
Leadership
• Clear overall responsibility for dementia will be
assigned to a person at HSE senior management level
• The HSE Clinical Strategy and Programmes Division to
establish a work stream on Dementia Care as part of its
Integrated Care Programme for Older Persons
• Within primary care services, a key worker to play a key
role in co-ordinating each patient’s care and promoting
continuity.
Leadership – additional actions
• HSE to provide leadership at a system level for the implementation
of the Strategy with clear and effective management structures
• The DoH and the HSE to develop performance indicators to
measure progress in implementing the strategy. Mid-term review in
2016
ASI response
• welcome this first step while recognising that real progress will
require strategic financial investment and a new social and community
approach to dementia.
•there are certain aspects of the Strategy that have not met our
expectations.
- lack of priority given to the needs of people with younger onset
dementia and the absence of a commitment to remove age
discrimination barriers in the health system.
- there is little focus on residential care. There is also very little in the
priority actions that gives rise to a new social and community approach
to dementia or prioritises the development of the Dementia Friendly
Community model.
- We do welcome the identification of new HSE leadership around
dementia, but are disappointed that this is not mirrored within the
Department of Health.
Your thoughts???
Thank you...
Contact details
Margaret Crean
Policy Officer
email: [email protected]
DD: 00 353 1 2073832
Mob: 00 353 860295634
Website www.alzheimer.ie