Disability Federation of Ireland
Submission to the Consultation on a
National Strategy on Dementia
August 2012
Consultation on a National Strategy on Dementia
Disability Federation of Ireland
The Disability Federation of Ireland (DFI) welcomes the opportunity to contribute to
the development of a National Strategy on Dementia. DFI represents the interests
and the expectations of people with disabilities to be fully included in Irish society.
Our interest in the development of a Dementia Strategy derives from our work with
voluntary organisations who support people with dementia and their families and
from our concern that Irish social policy enables people with disabilities to live as full
citizens.
DFI’s 126 voluntary disability organisation members engage with people across a
wide range of disabilities and disabling conditions including mental health conditions.
Several of our members work with people with dementia and their carers, including
The Alzheimer Society of Ireland.
In addition to supporting voluntary disability organisations to maximise their
effectiveness in enabling people to maintain their wellbeing and participate, DFI
engages with people with disabilities, for example to enhance their capacity to
represent their own interests and / or those of others with disabilities in local
decision-making fora.
DFI works to influence social policy and implementation of the National Disability
Strategy. It also supports the UN Convention on the Rights of Persons with
Disabilities, which Ireland is committed to ratify. DFI participates in a range of
national and local consultative bodies, including the Community & Voluntary Pillar,
the Disability Stakeholders Group and the European Disability Forum, the latter
representing the interests of 80 million Europeans with disabilities.
Strategic Priorities
The report, Creating Excellence in Dementia Care, makes a compelling case for a
comprehensive strategy to reform the health system in regard to dementia care. We
agree that the approach requires multiple perspectives. We see the various
elements that the report identifies for inclusion in the Strategy as inter-related,
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making ranking them problematic. In DFI’s experience, a focus on community-based
services and on research and improved information are critical.
As suggested in the report, it is the needs and perspectives of the people with
dementia that must drive interventions. The over-riding principles that follow from
this should guide the formulation of the strategy. In DFI’s view the UN Convention
on the Rights of Persons with Disabilities (UNCRPD) provides a practical reference.
For example, Article 17 states, “Every person with disabilities has a right to respect
for his or her physical and mental integrity on an equal basis with others.” All
‘providers’ need to develop ways of listening to people with dementia and responding
to their expressed needs. The Alzheimer Society of Ireland, in its submission to the
consultation, names eight essential elements to developing the strategy that DFI
would endorse.1
Community-based Services
Article 19 of the UNCRPD concerns the right of people to live independently and be
included in the community. Achieving this for people with disabilities requires a well
resourced and coherent package of policies and practices that yields a disabilityfriendly culture and environment, and strong, accessible primary health care across
all stages of the life cycle.
Person-centred practices and a focus on supporting access to mainstream services
and living opportunities should underpin the strategy. For example barriers created
by administrative boundaries based on age or geographic categories that impede
diagnosis or appropriate care have to be tackled. Charging fees (means-tested or
not) for the supports required to enable a person to live an ordinary life, including
charges for home support services, is unacceptable. Further, the research paper‘s
case for legislation to underpin home care supports is well founded. Otherwise
enabling people to remain in the community and have an adequate standard of living
continues to be a lottery.
Voluntary disability organisations are an important resource, not only for providing
specific health and personal social services but also in facilitating people with
dementia and their carers to access mainstream opportunities. This mediation role
1
The Society applied a carefully constructed consultation process to inform its submission paper.
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should be named in the Strategy. Many voluntary organisations are led by people
with disabilities and family members which encourages trusting relationships and
grounds them in the community. To date, however, their contribution towards good
outcomes for people has been poorly appreciated. Their capacity and potential for
innovation is particularly significant given the fiscal situation and the demographic
forecasts.
Health and personal social services will be central to the strategy, but other types of
public services have a role too. Local authorities can facilitate people maintaining
their independence, for example through Housing Adaptation Grants; the
Department of Social Protection’s rules on benefits affect family carers and the
community policies Department of Environment, Community and Local
Government’s impact on the capacity of community groups that engage with people
with dementia and their families. The strategy needs to reflect the ‘big picture’.
Research and Information
Article 31 of the UNCRPD concerns statistics and data collection. In the same vein,
the research report highlights the very limited information available about people with
dementia and the services and supports they need or they receive. This message
was repeated in the recently published Value for Money and Policy Review of the
HSE’s disability services where the information that was available mostly related to
residential services with little evidence about community-based services or about
those people with disabilities not regularly dependent on institutional-type provision.
The Value for Money Review highlighted the compartmentalised and unsatisfactory
nature of existing data. The National Physical and Sensory Database does not
attempt to extend coverage to people aged over 65 years. Moreover the data on the
number receiving specific types of care or the extent of that care in relation to need
are deficient. Improving information about people aged less than 66 who experience
dementia needs to be a priority.2
The Review recommends a more inclusive approach to data collection, with
recipients of services assigned a unique identifier without further delay. It proposes a
2
See Trutz Haase (2005) Early Onset Dementia: A Needs Analysis of Younger People with Dementia
in Ireland: Dublin The Alzheimer Society of Ireland
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standardised person centred needs assessment process although the methods are
not spelled out. Part 2 of the Disability Act 2005 provides for an assessment
procedure that is relevant to people with dementia, but it has not been applied to
people older than four years of age. The progressive nature of dementia, and the
strong possibility that the capacity of family carers may decline, imply a recurrent and
inclusive process.
Changes being introduced by the Government regarding health provision include the
establishment of seven directorates, one of which is the Social Care Directorate to
cover older persons and disability. More integrated services and data collection
should be built into the modus operandi of the new entity. At the same time access
to other health services and services beyond health will be essential for people with
dementia, whatever their age. We need to have person centred data that extends
beyond traditional service provision and also encompasses non medical, personcentred interventions that support participation and health maintenance.
Performance indicators that link to the outcomes achieved for people need to be
developed.
Other Issues
The Strategy has to establish a solid basis for successful implementation that
includes continued stakeholder engagement and monitoring that reveals where
progress is and is not being achieved. Although the National Disability Strategy was
announced in 2004, no implementation plan has been produced. Such a plan is
expected to be published soon, but meanwhile the recession has caused significant
setbacks for people with disabilities seeking to participate as full citizens.
Conclusion
DFI has advocated a more integrated approach to disability and older person policies
and information collection. We expect that the dementia strategy, which clearly
straddles the two areas, will facilitate such reform. But it needs to do much more
because people with dementia need access to the full range of services and
supports that underpin their wellbeing. We anticipate a further benefit from the
Strategy, in raising the profile of community-based activities by carers and others
and presenting voluntary and community organisations as vehicles for meeting the
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challenge of achieving the best possible outcomes for people with dementia.
Dementia has been hidden and compartmentalised for too long, but developing a
National Dementia Strategy is a critical step forward.
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The Disability Federation of Ireland (DFI) represents the interests and the
expectations of people with disabilities to be fully included in Irish society. It
comprises organisations that represent and support people with disabilities and
disabling conditions.
The vision of DFI is that Irish society is fully inclusive of people with disabilities and
disabling conditions so that they can exercise their full civil, economic, social and
human rights and that they are enabled to reach their full potential in life. DFI’s
mission is to act as an advocate for the full and equal inclusion of people with
disabilities and disabling conditions in all aspects of their lives.
DFI works on the basis that disability is a societal issue and so works with
Government, and across the social and economic strands and interests of society.
For further information go to www.disability-federation.ie
Disability Federation of Ireland, Fumbally Court, Fumbally Lane, Dublin 8
Tel: 01-4547978, Fax: 01-4547981
Email: info@disability-federation.ie Web: www.disability-federation.ie
Union of Voluntary Organisations of People with Disabilities trading as The Disability
Federation of Ireland is a company limited by guarantee not having share capital, registered in
Dublin.
Registered No. 140948, CHY No 6177
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