By way of marking World Alzheimer’s Day the DSIDC and the Alzheimer’s Society of Ireland jointly hosted a seminar designed to up-skill health care professionals and the public about memory problems, brain health and cognitive reserve.  The seminar took place at the Stephen’s Green Hibernian Club in Dublin on Sept 21st and attracted much interest.   The event was attended by over 100 practitioners, service planners, people with dementia, caregivers and other lay people. Speakers included Dr Alberto Blanco, Neuropsychologist at Our Lady of Lourdes hospital in Drogheda, Dr Olga Cleary, Policy Analyst from the Institute of Public Health and Dr Sabina Brennan Neuropsychologist and Co Director of the NEIL programme at Trinity College.  A key message conveyed at this seminar was the importance of primary prevention; that cognitive and brain health in later life is rooted in physical and mental health from early life and that we can all engage in lifestyle choices and behaviours which may ultimately delay or reduce the risk of our developing dementia in later life.  The event was chaired and opened by Suzanne Cahill Director of the DSIDC and Tina Leonard, Head of Advocacy and Public Affairs at the Alzheimer’s Society of Ireland, made concluding remarks.

Dr Alberto Blanco

Understanding the Cognitive Signs and Symptoms of Dementia

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Dr Olga Cleary

Modifying the Risk of Dementia

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Dr Sabina Brennan

Brain Health Building Reserve and Reducing the Risk

The second half of the seminar involved local experts who provided their own individual perspectives on stigma and dementia.  Ronan Smith opened this session with a very honest and powerful account of his coming to terms with both his own and his father’s diagnosis.  He talked openly about the decision he made some time ago, to “go public” with his diagnosis, when several of his good friends advised him otherwise.  He provided rich insights into the courageous strategies he has adopted to live life well, despite his diagnosis and move forward.   Ronan continues to work as a theatre producer, has become a great advocate for dementia and enjoys an active family life.  His talk was then followed by that from Sean Donal O’Shea, who gave a snap-shot overview of the personal dilemmas faced, devoting himself selflessly to caring for his mother, Debbie diagnosed with young onset dementia. Sean Donal addressed the difficulties his mother is confronted with, in particular, her being forced to give up some of the things she loves including dancing.  He talked about stigma and social isolation; how some of his mother’s friends have literally moved away, but he also highlighted the richness of his journey with his mother and the life changes he has made because of her illness, from working in the construction industry to the achievement of a first class honours degree in Applied Social Studies in Social Care.

Tina Leonard, Head of Advocacy and Public Affairs at the ASI then followed with an excellent presentation on the role the ASI plays in tackling stigma in society.  Tina reminded us of current prevalence rates and pointed to the importance of language in dementia care and putting the person at the centre stage.  Her presentation was then followed by that from Fidelma Browne, Head of Public Communications Division, HSE, who provided us with a helpful overview of her division’s experience in conducting public awareness campaigns and the plans the HSE now has, for rolling out a new dementia awareness campaign as part of the National Dementia Strategy.  This work is due to commence in June of this year.

The final presentation came from June Shannon, a journalist, who gave us a compelling account of the media’s role in providing a balanced account in writing about dementia and some of the choices and dilemmas she herself has personally been confronted with, when attempting to write on this topic.   Just as there are guidelines for journalists on topics such as mental health and suicide, June argued there is a need for guidelines on dementia to be developed for journalists.  The seminar concluded that stigma in the context of dementia is still rife in Irish society.  Some additional recommendations were forwarded as to how this could be further combatted.

The work presented at this Symposium is part of the DSIDC’s Living with Dementia research programme funded by the Atlantic Philanthropies and conducted in The School of Social Work and Social Policy at Trinity College Dublin.  The LID programme is committed to empowering and giving voice to people affected by dementia. It supports research projects that aim to make a real difference to the lives of all those affected by Alzheimer’s disease and the related dementias.  The programme is also committed to de-stigmatizing dementia and dispelling some of the myths widespread in society about this illness.  Ultimately the programme is concerned with capacity building, and improving and expanding services for all those affected by dementia.  It also seeks to ensure that research findings are disseminated to a wider audience both nationally and internationally.  This Nordic Congress provided an excellent opportunity for the achievement of this latter goal of research dissemination.

The Symposium brought together a group of young academics, most of whom have recently graduated from Trinity College Dublin, with PhDs in the area of ageing and dementia. The central theme of this Symposium was on public attitudes to dementia, stigma and psycho-social service interventions. Dr Emer Begley opened the Symposium by presenting findings based on a research study, where she  looked at the service needs and service usages of a group of people recently diagnosed with dementia.   Her work was the first of its kind in Ireland to attempt to gain insights from people with dementia themselves on their views of service needs and service supports in the period immediately following their diagnosis.  Dr Maria Pierce followed, by reporting findings from a new Genio in-home respite intervention, recently introduced and being trialled in a rural setting in Ireland. This new service augments rather than substitutes  for current statutory service provision.  Maria’s presentation pointed to some of the excellent outcomes derived from such an intervention both for the individual and for the family member.  Dr Andrea Bobersky then spoke about her PhD research where she looked at transitions into long-term care for people with dementia, their family caregivers and for paid care staff. Her work demonstrated the paucity of  community care services in use prior to long term residential care placement and the way in which family members were obliged to make life changing decisions about long term care placement in a rushed way, sometimes over night.   Her work also showed how stressful it is for paid care staff coping with new admissions into long term care particularly when family members tell lies or half truths to their relatives about the nature of the relocation.    The final speaker was Vanessa Moore who presented findings on General Practitioners’ attitudes to diagnosing and disclosing dementia, based on a recent cross-national study of Irish and Swedish medical practitioners.

The discussant Associate Professor Suzanne Cahill reported on current and future dementia prevalence rates in Ireland and provided a broad overview of Irish dementia care policy.  She then drew out the main themes emerging from each of these four papers and discussed them against the backdrop of  policy trends internationally, Ireland’s forthcoming National Dementia Strategy and ageing and dementia care practice in Ireland.

L-R Dr Ana Diaz, Dr Caroline O’Nolan, Associate Professor Suzanne Cahill, Professor Steve Zarit and Professor Eamon O’Shea pictured at the Symposium on Caregiving and Dementia

Caregiving at a Cross-Roads; Bridging the Gap between Science and Practice

Professor Steve Zarit

Costing Care for People with Dementia in Ireland

Professor Eamon O’Shea

“I Have a Good Life, I just want to Keep it”; Subjective Understandings and Objective Evaluations of Quality of Life after Diagnosis of Dementia

Dr Ana Diaz

Burdens and Paradoxes in Caregiving

Professor Charles Normand

On Wednesday 21st may, the DSIDC, Trinity College Dublin and the Irish Centre for Social Gerontology hosted a two hour interactive workshop on the topic of respite care at the Royal Irish Academy Dawson Street.  The guest speakers were Professor Steve Zarit, his wife Dr Judy Zarit (from Penn State University, USA) and John Coleman, a public health nurse who is currently attached to the Blackrock/Stillorgan Dublin project.  Chaired by Professor Des O’Neill the event was attended by an audience of some 70 people, including formal and informal caregivers.

The main focus of the evening was on discussing the range of respite options (in-home, adult day care, overnight care) available to people with dementia and their family caregivers both in Ireland and in the US.  Some of the potential benefits of respite for both family members and for people with dementia were highlighted and the barriers that prevent famlly caregivers from using respite services were also discussed.

Unlike other interventions, respite care has the potential to help family caregivers cope with the day to day task of providing dementia care.  During the workshop Professor Zarit drew on his own empirical research to demonstrate the type of outcomes derived for caregivers from using day respite care on a regular basis and how respite can actually help to reduce caregiver burden and lead to improvements in mood and emotion.

In her description of her work as consultant to nursing homes in the US over many years and more recently as a family caregiver, Dr Judy Zarit explored some of the barriers (practical, financial and psychological) family members confront attempting to use respite.  All three of the speakers led interesting and informative discussions on promising strategies for use to enable caregivers overcome some of the barriers associated with using respite.

Pictured above Dr Judy Zarit and Professor Steve Zarit

The aim of the seminar is to debunk prevailing fears, myths and misunderstandings about Alzheimer’s disease and the related dementias commonly held in society and to explore the critical impact that dementia along with its stigma often has on the individual diagnosed and on other family members.

Our key-note speaker, the eminent Professor Perla Werner, Vice Rector of the University of Haifa in Israel.  Professor Werner is a world-class scholar who has since the 70’s been working tirelessly in the area of advancing knowledge and research in Social Gerontology for four decades.

Prof Perla has published more than 200 papers in peer-reviewed journals and has received numerous grants from prestigious institutes, including the NIA, the Science Foundation and Alzheimer’s Associations.  She has served as the Head of the Department of Gerontology, as Dean of Faculty of Social Welfare and Health Sciences and as the Head of the Centre for Research and Study of Aging at the University of Haifa. Several of her recent works have addressed the important topic of stigma, public and professional understandings of Alzheimer’s disease and the related dementias.  Her presentation at this seminar is titled “Stigma and Alzheimer’s disease: Why Study”?

The 2014 National Memory Clinic Conference jointly hosted by the Mercer’s Institute for Successful Ageing and the DSIDC was held at the Trinity Biomedical Sciences Institute on 16th May.

The conference was titled ‘Dementia: More than Memory’.  It explored the theme that dementia has many facets including psychiatric and behavioural aspects, especially in people with young onset dementias. Speakers included: Professor Orla Hardiman and Professor John Hodges whose presentations were about frontal temporal dementias.  Other speakers included Professor Clive Holmes who discussed the role of inflammation in the course of Alzheimer’s Disease and Professor Carol Brayne who talked about dementia as a “syndrome” and the shift from dementia being seen as a burden to it nowadays for some being seen as a business.  Professor Brayne also presented findings based on population studies reflecting the small decrease in dementia prevalence rates witnessed recently in the UK. Dr Alberto Blanco who discussed Neuro-Psychological testing,  highlighted the value of qualitative interpretation of cognitive testing.  Other speakers included, Mr Gerry Martin, the new CEO of the Alzheimer Society of Ireland who informed us of the development of their new  ‘dementia advisor’ service. The day was completed with a presentation on brain health from Dr Sabina Brennan from NEIL Institute at Trinity College.  As before, the turn out for this conference was high and the feedback from the audience was extremely positive.

Pictured above L-R Professor Jennifer Hoblyn, Professor John Hodges, Professor Brian Lawlor and Professor Clive Holmes

Conference Presentations

Professor John Hodges

Frontotemporal Dementia: Towards better diagnosis

Professor Carol Brayne

Insights into the brain for ageing populations

Mr Gerry Martin

Signposting and Support: The Alzheimer Society of Ireland Developing a Dementia Advisory Service

Dr Alberto Blanco

Understanding Cognitive Performance –  Importance of Observation, Qualitative Interpretation and Critical Thinking

Professor Orla Hardiman

ALS and Dementia

Long Term Care and People with Dementia in Ireland

Associate Professor Suzanne Cahill

Staying Connected with the Person with Dementia

Cecilia Craig

Alternative Care Settings for People with Dementia

Janet Convery

Impact of the Care Environment on People with Dementia

Matthew Gibb

Dementia and Medication

Dr Siobhan Ni Bhriain

Dr Clive Baldwin
A Narrative for Person Centred Care (PDF 106k)

Ms Dianne Gove
Ethics & Assistive Technology in Dementia Care (PDF 926k)

Prof Des O’Neill
MedLine & the Medical Humanities in the Ethics of Dementia (PDF 2.5MB)

Ms Jessica Watson
Dementia, Relationships and Intimacy (PDF 254k)

Dr Kieran Doran
Ethical & Legal Issues in Patient Consent: Advanced Directives (PDF 13MB)

Dr Ian James
The Role of Lies in Person Centred Care (PDF 8MB)

Dr Regina McQuillan
Medical Ethical Decisions Towards the End of Life (PDF 123k)