Research

Completed Research

Research into dementia and dementia care management is one of several academic activities which Dementia Services Information and Development Centre currently undertakes. The Centre is committed to promoting excellence in all aspects of dementia care research and to creating a dynamic research culture which will attract high quality staff and students to work and study within.

The Centre does not subscribe to any one particular research paradigm, rather its research initiatives stem from practice issues and both quantitative and qualitative methodologies are employed to investigate issues of concern to persons with dementia, family caregivers, and service providers working in the field.

A survey of Dementia specific Day Care Centres in Ireland

This was a national survey of service providers’ attitudes to the design and lay out of day care centres in Ireland offering dementia specific care. The project was undertaken during 2000 and its findings have been published.

Ref: S. Cahill, M. Drury, B. Lawlor, D. O'Connor, and M. O'Connell

'They Have Started to Call It Their Club': A survey of staff views of dementia-specific day care centres in Ireland

Dementia: The International Journal of Social Research and Practice; February 1, 2003; 2(1): 85 - 103.

An Exploratory study of Irish Nursing Homes and their Spatial Environment

This project co-funded by the Health Research Board and the Alzheimer Society of Ireland was undertaken to examine the topic of architectural design and dementia care and to explore the extent to which design features in Irish nursing homes comply with an international consensus. Results from the study will contribute to the development of guidelines on accommodation and design for nursing homes offering dementia care (CLICK HERE TO READ THE STUDY REPORT)

Enable

Enable was a European funded longitudinal study designed to test out various assistive technologies in peoples’ homes in order to promote more independent living for people with dementia and to enable them by improving their quality of life.The project was led by Norway and involved the participation of four other countries including Finland, Ireland, England and Lithuania.

Products being tested included, an item locator, (designed to help find items which are regularly mislaid), a night lamp, (designed to assist people with orientation at night), a picture-telephone – which was programmed with names rather than numbers, a cooker switch off device which ensures that gas plates automatically turn off if left on in error and a night and day calendar which is used to aid orientation in time. The project is now complete. A total of some 30 men and women with dementia and their family caregivers participated in the study.

Another component of the ENABLE project involved the testing out of a picture-gramophone in an Irish Day Care Centre. The picture-gramophone is a touchscreen computer, which works in tandem with a CD Rom and enables a person with dementia listen to his or her favourite music whilst the song’s lyrics scroll on the computer screen. The product has been developed by an Occupational Therapist and has been evaluated as part of the ENABLE project. The project's findings provided evidence that technologies can be used creatively to promote more independent living in a person with dementia and reduce caregiver stress.

Enable website: http://www.enableproject.org

Ref: Cahill, S., Begley, E. & Hagen, I.(2008). Health technologies for people with early dementia: The ENABLE Project. In E. Moniz-Cook & J. Manthorpe, (Eds), Psychosocial interventions in Early Dementia: Evidence-Based Practice. Jessica Kingsley, London.

A Study of Recalcitrant Patients and Memory Clinic Appointments

flowers The waiting list for attendance at the National Memory Clinic in Ireland now stands at approximately three months and failure to attend appointments; results in a waste of resources for this already rationed health service.

This small-scale exploratory piece of research was designed to examine the issue of why patients failed to attend a first Memory Clinic appointment. Postal questionnaires were sent to a sample of patients who failed to attend their first Memory Clinic appointments.

The Subjective Experiences of New Patients and their Primary Caregivers attending a National Memory Clinic.

While calls for studies seeking out the perspective of the person with dementia in relation to services received have been made for some time (Cotrell & Schultz, 1993), research investigating this topic has to date been very limited.

This was an exploratory piece of research designed to look at some of the issues and concerns experienced by patients and their principal caregivers attending a memory clinic for the first time. Findings from this pilot study have been used to develop an information booklet for all new attendees presenting at the Memory Clinic.

Ref: Cahill, S., Headon, M., Gibb, M., Drury, M & Bruce, I. (2008).“I was worried coming in because I don’t really know why it was arranged”: The Subjective Experience of New Patients and their Primary Caregivers attending a Memory Clinic”. Dementia: The International Journal of Social Research and Practice; Vol. 7, No. 2, 175-189

Detecting and Diagnosing Dementia: The First GP Irish Study.

The DSIDC in collaboration with the ICGP last year completed a research study investigating the topic of services for the detection, diagnosis and disclosure of dementia to patients attending General Practice. The study yielded a wealth of information about Irish GP's attitudes to screening for and diagnosing dementia. GPs could easily identify difficulties experienced detecting dementia in community settings.

Most were reluctant to tell their patients their diagnosis. Overwhelmingly the findings demonstrated a huge interest on the part of Irish GPs for upskilling in the area of dementia management and for training and practice guidelines that would help inform their work.

References:

Cahill, S., Clark, M., O’Connell, H, Lawlor, B., Coen R., & Walsh, C. (2006). Dementia in Primary Care: the first survey of general practitioners, International Journal of Geriatric Psychiatry(21), 319 – 324.

Cahill, S., Clark, M., O’Connell, H, Lawlor, B., Coen R., & Walsh, C. (2008).The attitudes and practices of general practitioners regarding dementia diagnosis in Ireland. International Journal of Geriatric Psychiatry (23), 663 - 669.

Challenging Behaviours

Ref: Cahill, S. Behaviours that Challenge: Some Suggestions for Family Caregivers (2008). Forum Journal of the Irish College of General Practitioners

Research

The Centre is committed to promoting excellence in all aspects of dementia care research and to creating a dynamic research culture, which will attract high quality staff and students to work and study within. The Centre does not subscribe to any one particular research paradigm, rather its research initiatives stem from practice issues and both quantitative and qualitative methodologies are employed to investigate issues of concern to persons with dementia, family caregivers, and service providers working in the field.

Programme

Ongoing Research

Approaches to Dementia Questionnaires were completed by participants of the Extra Mural programmes under the direction of Maeve Clark. Questionnaires were coded and entered into our statistics analysis software (SPSS).

Questionnaire on Experiences and Attitudes about Working in Dementia Care (WDC) was developed and trialled with the Extra Mural participants.

The effectiveness of anti-dementia drugs from a consumer and primary caregiver perspective was researched by Matthew Gibb. The paper entitled “I would take anything or do anything or pay anything to hang on to my memory”: Subjective Experiences of Acetylcholinesterase Inhibitors is close to completion.

Completed Research Projects

A survey of Dementia specific Day Care Centres in Ireland

References: S. Cahill, M. Drury, B. Lawlor, D. O'Connor, and M. O'Connell
'They Have Started to Call It Their Club': A survey of staff views of dementia-specific day care centres in Ireland
Dementia: The International Journal of Social Research and Practice; February 1, 2003; 2(1): 85 - 103.

An Exploratory study of Irish Nursing Homes and their Spatial Environment

Enable

An Exploratory study of Irish Nursing Homes and their Spatial Environment Enable was a European funded longitudinal study designed to test out various assistive technologies in peoples’ homes in order to promote more independent living for people with dementia and to enable them by improving their quality of life. The project was led by Norway and involved the participation of four other countries including Finland, Ireland, England and Lithuania.

The product has been developed by an Occupational Therapist and has been evaluated as part of the ENABLE project. The project's findings provided evidence that technologies can be used creatively to promote more independent living in a person with dementia and reduce caregiver stress.

Enable website: http://www.enableproject.org

References: Cahill, S., Begley, E. & Hagen, I. (2008). Health technologies for people with early dementia: The ENABLE Project. In E. Moniz-Cook & J. Manthorpe, (Eds), Psychosocial interventions in Early Dementia: Evidence-Based Practice. Jessica Kingsley, London.

A Study of Recalcitrant Patients and Memory Clinic Appointments

The waiting list for attendance at the National Memory Clinic in Ireland now stands at approximately three months and failure to attend appointments; results in a waste of resources for this already rationed health service. This small-scale exploratory piece of research was designed to examine the issue of why patients failed to attend a first Memory Clinic appointment. Postal questionnaires were sent to a sample of patients who failed to attend their first Memory Clinic appointments.

(Unpublished research)

The Subjective Experiences of New Patients and their Primary Caregivers attending a National Memory Clinic.

The Subjective Experiences of New Patients and their Primary Caregivers attending a National Memory Clinic While calls for studies seeking out the perspective of the person with dementia in relation to services received have been made for some time (Cotrell & Schultz, 1993), research investigating this topic has to date been very limited. This was an exploratory piece of research designed to look at some of the issues and concerns experienced by patients and their principal caregivers attending a memory clinic for the first time. Findings from this pilot study have been used to develop an information booklet for all new attendees presenting at the Memory Clinic.

References: Cahill, S., Headon, M., Gibb, M., Drury, M & Bruce, I. (2008). “I was worried coming in because I don’t really know why it was arranged”: The Subjective Experience of New Patients and their Primary Caregivers attending a Memory Clinic”. Dementia: The International Journal of Social Research and Practice; Vol. 7, No. 2, 175-189

Detecting and Diagnosing Dementia: The First GP Irish Study.

References:

Cahill, S., Clark, M., O’Connell, H, Lawlor, B., Coen R., & Walsh, C. (2008). The attitudes and practices of general practitioners regarding dementia diagnosis in Ireland. International Journal of Geriatric Psychiatry (23), 663 - 669.

Challenging Behaviours

References: Cahill, S. Behaviours that Challenge: Some Suggestions for Family Caregivers (2008). Forum Journal of the Irish College of General Practitioners.

Living with Dementia

Please click here to access Living with Dementia Research Programme Website

The Living with Dementia project was established in Autumn 2007. It is a programme of psycho-research designed to examine policy and practice related issues in dementia care. The programme is part of the School of Social Work and Social Policy and the Dementia Services Information and Development Centre (DSIDC) at St James Hospital.

Inherent in the philosophy underpinning the programme is the belief that psycho-social interventions in dementia care, make a real difference and can improve quality of life in people diagnosed with dementia and reduce caregiver burden. The programme also seeks to impact on policy development and contribute to the design of best practice models for all those affected by dementia.

A key rationale for generating this programme of research is the creation of evidence of best practice or evidence on which to base practice. This is critical in the Irish context where at present there is a veritable vacuum of knowledge, a lack of understanding of the needs of people with dementia and their family caregivers and staff employed in care settings sometimes with limited formal training.

The programme is based on the premise that people with dementia have a right to good quality services and should have a choice of care packages designed to meet their individual cognitive, spiritual, social, and emotional needs.

The key activities of the programme include the recruitment and supervision of young academics to develop research competencies in areas previously under-investigated in the Irish context, the development of collaborative arrangements between care environments such as nursing homes, day care centres and hospitals and research and training centres, and the training of PhD students in the area of dementia care.

Expected milestones include (i) the development of practice guidelines to help to upskill health service professionals and enable them better cope with the dilemmas confronted in dementia care, (ii) the development of a sound social science research infrastructure in dementia care and (iii) the communication of high quality research findings to practitioners and policy makers thereby contributing to models of best practice.

Director

Dr Suzanne Cahill is currently the Director of the Living with Dementia programme. Prior to taking up this appointment, she had been national Director of the Dementia Services Information and Development Centre at St James Hospital for some 8 years.

Dr Cahill has been actively involved in the area of lobbying for the rights of persons with dementia for many years both in Australia and in Ireland. In Australia she was employed at the University of Queensland where as an Academic she lectured in the area, wrote her PhD on the topic of Social Policy and Family Caregiving and was an energetic advocate serving on many different Alzheimer's Association boards.

Since returning to Ireland she has published nationally and internationally in the area and has also produced some useful dementia care training videos.

PhD Student

Andrea Bobersky has recently been awarded the first of these PhD studentships. Andrea is a trained Psychologist who has worked overseas in the area of dementia care and has lectured in Social Gerontology.

Her research thesis will examine the topic of the effects on residents with dementia of relocation from a traditional care ward to a specially designed dementia care unit

PHD Studentships

Two fully funded PhD studentships in dementia care are currently available and an additional two scholarships will be available through the School of Social Work and Social Policy and the DSIDC in 2009. These studentships will provide opportunities for graduates to acquire a range of skills and training relevant to their research, policy and practice careers. The Living with Dementia programme and PhD studentships will focus on three broad research areas namely;

training and its impact on health service professionals and on care practices
the effectiveness of non-pharmacological interventions on quality of life, mood and behaviour
the social, emotional, spiritual and financial cost of family caregiving

Research Study on the Prevalence of Dementia in Long Stay Care

This study on dementia and cognitve impairment prevalence rates in nursing homes in the Dublin area is now completed and the work is currently in Press and due for publication in the journal Age and Ageing. It found that in a random sample of 100 residents surveyed across four nursing homes, 89% had a cognitive impairment, of whom 42% had a severe, 27% moderate and 20% mild impairment.

Only one third of these residents had a prior clinical diagnosis of dementia, nor was dementia a major reason for nursing home admission-accounting for only 14% of admissions. The research also found that nursing home staff in general tended to under-estimate the level of cognitive impairment detected in residents but in cases where a clinical diagnosis was available, assessments were considerably more accurate.

Findings from this study would suggest that there is much under-detected dementia/cognitve impairment in Dublin based nursing homes. The results from this study have now been fed back to the nursing homes who participated in the project and recommendations about best practice have been made. We would like to thank Directors of Nursing and other nursing home staff for their assistance with this work.

In another related study looking at quality of life for a large sample of older people living in nursing homes, a striking theme emerging from in-depth interviews with participants was the importance of family and staff relationships, privacy and intimacy.

Loss, including loss of independence, absence of friendship, loss of home and deaths were identified as sources of sadness to nursing home residents and as factors that adversely impacted on quality of life. Those with a severe cognitive impairment were more likely to feel acutely dislocated in long term care and feelings of abandonment and loneliness emerged in their narratives. These views were reinforced by findings from the proxy informant interviews for the same group.

The study's findings would suggest that policy makers, service planners and nursing home care staff pay particular attention to the unmet needs of the very vulnerable group of people with a severe cognitive impairment. We also recommend that in research studies on quality of life, proxy informants should be used to complement the voices of those with a severe dementia.

Results from this work are currently being used to develop a useful pamphlet for nursing home staff and family caregivers about policies and practices which best promote quality of life.

Memory Clinics in the Republic of Ireland

This report details the findings of a recently completed study highlighting the locations and service provisions of services around the Republic of Ireland that are concerned with people with memory problems. This is in light of the realisation that Ireland is lacking in an up-to-date Memory Clinic directory.

The report outlines any services that were located in Ireland during the course of data collection for the study. It serves to inform people who may be concerned about their memory of the locations of Memory Clinics nearest to them and the facilities they offer.

The report summarises each clinic in terms of where it operates from, the contact number and the services provided. Also included are the funding profiles, diagnostc information, and waiting times.

It found that there are eight Memory Clinics in Ireland, four of which are based in Dublin. Seventy five percent of the clinics offer drug treatment but only three have a full time neuropsychologist as part of their team. All clinics offer at least one follow-up appointment and extensive information is given to people who are worried about their memory.

This includes information on diagnosis, symptoms of memory problems, driving, support agencies such as the Alzheimer Society and general advice for dealing with a possible memory problem.