We need basic kindness in dementia

The aim of the new three year National Dementia Strategy with a budget of €27.5 million was to improve dementia care so that people with dementia could live well for as long as possible, could ultimately die with dignity, and could have services and supports delivered in the best way possible, Ms. Sarah Mahon, Senior Dementia Strategy Projects Manager, HSE, told the HMI West of Ireland Forum. Maureen Browne reports.

Ms Sarah Mahon
Ms Sarah Mahon

She said it was important that funding was linked to the strategy. It was planned that €22 million of the funding would be spent on home care packages for people with dementia. Smart technology was also really helping people to live with dementia.

She said the Strategy launched last December had a number of objectives. It sought to:

  • Raise awareness of dementia and its modifiable risk factors and to reduce stigma.
  • Ensure that appropriate supports and services could be accessed in people’s own homes and local community in the first instance, and in other settings as required.
  • Progress the dual and overarching principles of personhood and citizenship by enabling people with dementia to maintain their identity, resilience and dignity and by recognising that they remain valued, independent citizens who along with their carers, have the right to be fully included as active citizens in society.
  • Refocus current service delivery to address the individual needs of people with dementia and their carers in a way that is responsive and flexible.

Five priority areas for action have been identified – better awareness and understanding, timely diagnosis and intervention, integrated services, supports and care for people with dementia and their carers, training andeducation and leadership

Priority 1: Better Awareness And Understanding

Ms. Mahon said that public awareness and health promotion measures should provide a better understanding of dementia in society generally, reduce the stigma that could be associated with dementia, target populations particularly at risk, including people with an intellectual disability and support the implementation of Healthy Ireland (2013) by highlighting the modifiable lifestyle and cardiovascular risk factors which could beneficially impact on risk and time of onset of dementia.

Priority 2: Timely Diagnosis And Intervention

She said that a National and Local Dementia Care Pathway would be developed and this and other material would be made available to GPs. This included dementia-specific reference material to broaden their skills base, guidance on national and local pathways to investigation and diagnosis and information about health and social supports available in the local community. Guidance material on the appropriate management of medication for people with dementia would also be developed.

“Modifiable lifestyle risk factors, such as tobacco and alcohol use and physical inactivity, should be actively managed as part of the care plan for people with dementia.

“We will also review existing service arrangements so as to maximise the access that GPs and acute hospital clinicians have to specialist assessment and diagnosis of dementia, including Old Age Psychiatry, intellectual disability services, geriatric medicine, neurology services and memory clinics. We have had a focus on medication abuse as mismanagement of medication for people with dementia or using medication as a form of social control is an issue.”

Priority 3: Integrated Services, Supports And Care For People With Dementia And Their Carers.

Ms. Mahon said this involved a review of health and personal social services for people with dementia, to identify gaps in existing provision, and prioritise areas for action in accordance with resource availability.  It also involved considering how best to configure resources currently invested in home care packages and respite care so as to facilitate people with dementia to continue living in their own homes and communities for as long as possible and to improve the supports available for carers. They would also be evaluating the potential of assistive technology to provide flexible support both to carers and to people with dementia and ensuring that information on how to access advocacy services, voluntary organisations and other support services is routinely given to people with dementia and their families/carers.

Priority 4: Training And Education

She said the HSE would engage with relevant professional and academic organisations 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.

Priority 5: Leadership

“The implementation of the National Dementia Strategy will fall within the remit of the Cabinet Committee on Social Policy, to which the Department of Health will report annually on progress. The Minister for Health will appoint an Advisory Group to advise on the implementation of the Strategy and clear overall responsibility for dementia will be assigned to a person at senior management level within the Health Service.

“The Clinical Strategy and Programmes Division of the Health Service will establish a Workstream on Dementia Care as part of its Integrated Care Programme for Older Persons and a named key worker in primary care will be appointed to liaise with both primary and secondary care services to support the person with dementia and their carer.”

Additional Actions

Ms. Mahon said a number of actions additional to the Priority Actions have also being identified. These actions, in some cases, required resources additional to what was currently available, and would be considered as the required resources became available in the future.

Research And Information Systems

Funding for clinical, non-clinical (including psychosocial research) and HSE research on dementia would be a priority.

Ms. Mahon said better evidence in relation to dementia in Ireland was necessary. This included the needs and preferences of people with dementia and their carers and their experiences and care outcomes, improved national, regional and local estimates of current and future prevalence across all care settings, diagnostic rates, sub-types, use of anti-psychotics, clinical outcome.

It also included the need for and use of health and personal social services by people with dementia and their carers, health and social care system’s responses to the needs of people with dementia and their carers, the impact of training on quality of care and quality of life, evaluation of psychosocial interventions. And better collection of data and use of evidence to inform health and social system responses to the needs of people with dementia and their carers.

A Programme in Applied Dementia Research (HRB) aligned to the themes, principles and values of the National Dementia Strategy up to €4.57m was launched in 2014.

Ms. Mahon said that there were other additional actions required. It was necessary to promote an awareness of the Assisted Decision-Making (Capacity) Bill, when enacted. Following evaluation, the provision of ASI Dementia Advisors should be considered and a dementia and delirium care pathway should be developed and implemented.

A senior clinician within each hospital should be assigned responsibility to lead the development, implementation and monitoring of the pathway. Hospitals would be required to ensure that people with dementia had a specific pathway through Emergency Departments and Acute Medical Units and guidance would be developed on dementia-friendly ward specification. Hospitals would be asked to prioritise the assessment of social and environmental supports to meet the needs of people with dementia and their carers, including appropriate access to social work support.

A range of appropriate long-term care options to accommodate the diverse needs of people with dementia, including those with challenging behaviour would be examined. She would also like to see appropriate account taken of the potential of new residential models, including housing with care, for people with dementia in future planning and the development of appropriate training courses for family and other informal carers in keeping with the priorities highlighted in the National Educational Needs Analysis.