“European Master on Active Ageing and Age Friendly Society (EMMA)” Project
The EMMA project began in 2020 and is a collaboration between the universities of six European countries: Austria, Finland, Greece, Ireland, Portugal, and Slovenia. The aim of the project is to address the challenge of a rapidly ageing population, by creating a joint interdisciplinary and future oriented European Masters in Active Ageing and Age Friendly Society. The active ageing concept offers new ways to engage older people in society and thus enable them to lead a meaningful life and support economic and environmental sustainability. Achieving this requires action in many sectors: health, transport, education, housing, labour, social protection, information and communication, and by many actors – government, service providers, civil society, older people and their representative organisations, families and friends.
The project comprises a novel masters programme, with content, tools and validation developed through seven outputs, the first being a Needs Analysis currently led by UCC to determine student cohorts and learning needs in active ageing. The remaining six outputs focus on developing the Curriculum Framework, Core Modules, Elective Modules, E-learning and e-tools, Validation and Quality Assurance, and Accreditation. The resulting programme aims to provide professionals from a variety of disciplines with the competencies and tools necessary for systemic active ageing promotion.
Please link to the project here www.emma-master.eu
‘Mapping Parkinson’s Disease Needs and Services in Ireland (MapPD)
MapPD is an ongoing national research project, which aims to explore disease prevalence and incidence, map and characterise service provision, evaluate the quality of care, and understand the unmet service needs of people with Parkinson’s disease (PD) in the Republic of Ireland.
Why is this research important?
This research is timely, given that Parkinson’s disease is becoming more common as the population ages. Despite the rising prevalence, there has not been enough investment made in healthcare services to meet the demand for PD care in the population. This situation can have damaging effects on people with Parkinson’s, in terms of their physical and mental health, and quality of life. It can also lead to more hospital admissions, and excess disability, which might have been avoided if services in the community were better able to provide the right care and support, at the right time.
What does the research entail?
This programme of research involves three work packages:
- We are estimating the current and future prevalence and incidence of Parkinson's in Ireland, to facilitate service planning and development.
- We are mapping and evaluating the range of available health services for people with Parkinson's across the country. In addition, a national audit of PD care of all specialist Parkinsons/movement disorder clinics is being conducted to evaluate the quality of care delivered to PD patients across Ireland.
- In order to understand patients’ experiences of PD care, and any unmet needs they might have, we are conducting a national survey, and telephone interviews with people with Parkinson's (and/or carers).
The data from the above work packages will provide vital information for decision-makers in the HSE and Department of Health, to inform service planning and development.
Who is leading this research?
The project is led by principal investigator Professor Suzanne Timmons, in the Centre for Gerontology and Rehabilitation, University College Cork. Professor Timmons says “this research will help us understand how we can improve services, to support people with Parkinson’s in Ireland to live healthier and better quality lives”. We are partnered with the Parkinson’s Association of Ireland (PAI) for this project, along with the HSE’s National Clinical Programme for Neurology.
How has this research been funded?
The research was made possible through the generous bequest of Mr. Patrick Quinn, co-funded by the Health Research Board.
How can you get involved?
If you are a person living with Parkinson’s disease you may want to get involved and have your say about how we can improve PD care.
There are two ways to get involved in this research:
- You can complete our anonymous National Survey about your experiences of accessing and using health services for your Parkinson’s. It takes approximately 15-20 minutes. The survey can be completed over the phone with a researcher (either Emma, or Aphie), or we can post you a copy of the survey. It can also be completed online at the following link, by either a person with Parkinson’s, or a family member: https://docs.google.com/forms/d/e/1FAIpQLSeZpV-9F_7SX5bS9-KdGdlDJMaikHnvZ2N9HTdc9ebHU9LtLw/viewform?usp=sf_link
- You can do a 20-30-minute telephone interview with a researcher to share your story and experiences with the health system, in a completely confidential manner.
If you would like further information on this study, or how to get involved, contact a member of the project team:
Dr Emma O’ Shea
Email: email@example.com Mobile: 0860354526
Ms Aphie Rukundo
The Model for Dementia Palliative Care Project
People are living longer, which means that more of us will get age-related illnesses such as dementia. Although Dementia usually affects people as they get older, it’s not a normal part of ageing. Many people don’t realise that Dementia is a terminal illness. Palliative Care aims to improve the quality of life of people and their families who are facing an incurable, life-limiting illness, such as dementia. Palliative care involves actively looking for symptoms of any kind- physical, social, spiritual, or psychological – and providing excellent care to lessen these symptoms.
This project aims to improve the palliative care of people with dementia, and their families, by developing a “model”. This model aims to support people with dementia to live well at home in the community for as long as possible. The model will map out what services, assessments and treatments the person might need and where, so the health system can better organise their care.
You can learn more about this project by visiting the project website, where you will see blog posts, informational videos, infographics, and more.
Project Website: www.pallcare4dementia.com
The Smart sENsor Devices fOr rehabilitation and Connected health (SENDoc) project introduced wearable sensor systems in ageing communities in northern remote areas. In collaboration with Tyndall Institute (Cork) and partners in Northern Ireland, Sweden, and Finland, our team evaluated wearable sensors for their technical abilities and potential to be integrated into ageing communities. We conducted a trial where older adults wore an activity tracker for one week. We accessed physical activity data from the activity tracker and we collected feedback from the participants about their experience using the device. In a separate trial, we invited 30 people with Parkinson's disease to test a novel device that measures hand tremor and stiffness. The device is a glove with built-in bend sensors and an accelerometer. Data collected from participants contributed to the development of algorithms to detect motor symptoms in people with Parkinson's disease. The goal of this study is to develop wearable devices and promote their use in remote ageing communities.
With the goal of understanding user needs, we conducted focus groups with people with Parkinson's disease. The results of this study will inform future device development and trial design. We also conducted a systematic review of previous wearable device trials with older adults. The results of the review highlight several factors that contribute to wearable device use among older adults.
Wearable Enabled Symptom Assessment Algorithm (WESAA)
AbbVie Inc. is funding a project to develop a wearable device that can continuously measure Parkinson's disease motor symptoms. The goal is to create a device that can be used as part of clinical assessments and clinical trials. Prof Timmons provided guidance on developing the user needs and device requirements. Researchers at the Centre for Gerontology and Rehabilitation will collaborate with engineers from Tyndall and AbbVie to develop and trial a novel wearable device. The device will provide measurements of motor symptoms such as tremor and bradykinsesia. We will recruit people with Parkinson's to participate in a trial to test the effectiveness and acceptability of the device.
Young Onset Dementia
Young Onset Dementia: A Review of Diagnostic and Post-diagnostic Processes and Pathways
Dr Siobhán Fox, together with Dr Caroline Kilty in the School of Nursing and Midwifery UCC, was awarded funding through a competitive tender process from the HSE to undertake a review of Diagnostic and Post-diagnostic Processes and Pathways for People with Young Onset Dementia.
1 in 10 people in Ireland who are diagnosed with dementia are aged under 65, and this is termed “Young Onset Dementia”. The impact of a diagnosis at this time of their lives is huge, and also greatly impacts families, where young children may be involved. However, services in Ireland have typically overlooked this group, being targeted towards the needs of a much older population. This project investigated the specific needs of people with Young Onset Dementia, such as employment issues, need for family counselling, difficulty accessing dementia services with 65+ age referral criteria.
A multi-method approach was employed including a literature review, interviews with people with Young Onset Dementia, their families, and healthcare workers. Ultimately Dr Fox, Dr Kilty and colleagues, put forth a number of recommendations which will form the foundational step for the National Dementia Office to improve dementia care for all in Ireland, inclusive of all ages and dementia types.
The report was published during Alzheimer Awareness week in September 2020, and the full report can be accessed online at: https://dementia.ie/wp-content/uploads/2020/12/Youngonsetdementia.pdf
A report on the first Irish National Audit of Demetia Care in Acute Hospitals (INAD) was published and launched in January 2014 at the National Conference http://www.ucc.ie/en/inad/inadfullreport2014/. The audit, kindly funded by Atlantic Philanthropies and The Meath Foundation, was carried out in all 35 acute hospitals in Ireland for their care of people with dementia. The INAD report contained forty seven recommendations for better dementia care in acute hospitals, which fed into the draft Irish National Dementia Strategy, due to be published later this year, thus directly influencing national policy. An audit in Northern Ireland is currently in the planning stages.
National and international research confirms that an admission to an acute hospital can be distressing and disorientating for a person with dementia, and is often associated with a decline in their cognitive ability and levels of functioning around activities of daily living. In response to the need for more Irish data on dementia care in acute hospitals, the first Irish National Audit of Dementia care in acute hospitals was undertaken in 2013 to measure criteria relating to care delivery known to impact on people with dementia admitted to hospital.
The results from this audit have fed into the development of the Irish National Dementia Strategy.
Please see the INAD website for further information about the audit.
Further to the publication of the INAD (2014), the Northern Ireland Audit of Dementia Care in Acute Hospitals (NIAD) was carried out in 2014. The audit took place in all 12 acute hospitals in Northern Ireland, with a view to obtaining a baseline picture of the quality of care from admission through to discharge. It included four key work packages; hospital- and ward-level organisation modules, a patient healthcare record review and a physical ward environment checklist.
The Northern Ireland Health Minister, Simon Hamilton, welcomed the findings of the audit, saying “The recommendations from this audit highlight the importance of understanding the care needs of patients with dementia when they are admitted to an acute hospital ward. This information will shape the implementation of the regional dementia strategy, in particular the actions relating to hospital care.”
The implementation of the recommendations of the audit report is currently being steered by Seamus McErlean (Commissioning Lead for Older People and Adult Services at the Health and Social Care Board) and Eleanor Ross (Nurse Consultant, Public Health Agency), the leads for the regional dementia strategy implementation working group.
Please see the NIAD website for further information about the audit.
Palliative Care Needs in Parkinson's Disease
This Irish Hospice Foundation-funded project has examined the palliative care needs of people with Parkinson’s disease, from different perspectives, using multiple research methods. Using quantitative (surveys) and qualitative (interviews) methodologies the perceptions of, and attitudes towards, palliative care and assessed palliative care needs, have been explored from the perspectives of people with Parkinson’s disease, their carers and families, and healthcare workers across Ireland.
The first Irish national guidelines for ‘Palliative care for People with Parkinson’s disease and Related Parkinsonian syndromes’ were developed. The guidelines are endorsed by the HSE National Clinical Programmes for Neurology, Palliative Care, and Older People. These were launched to coincide with world Parkinson’s month in April 2016. The results of this research project have been widely disseminated in peer-reviewed journal publications, at national and international conferences, and at local education seminars.
Dr Timmons was awarded an Irish Research Council grant to host an interdisciplinary workshop on the topic of palliative care and neurodegeneration. The workshop was held in May 2016 and achievements include a successful networking event, newly fostered research collaborations, and an upcoming paper on recommendations for future research in this area. Dr Timmons’ research team were also invited to join an international working group of experts on palliative care and Parkinson’s, and have attended two meetings working group meetings in Denver (2015) and Portland (2016).
Physical Activity in Acute Hospitals
A study to determine whether an augmented prescribed exercise programme in the acute hospital setting can shorten patients’ length of stay and improve their physical and psychological well-being is also underway. A randomised controlled trial will be conducted to measure the effects of an augmented prescribed exercise program on physical ability, quality of life and health utilisation for frail older medical inpatients.
It is known that older adults are at risk of functional decline as a result of an acute hospital admission. Up to one third of older inpatients are reported to suffer a long-term functional decline . Many factors may contribute to this but the imposed, or simply accepted low physical activity levels may also be contributory. Studies have shown small positive benefits from additional exercise for older medical patients [2-4]and further meta-analysis suggested that targeting the frailer might strengthen the effects seen .
We conducted a small study in 2011 to measure the effects of an augmented prescribed exercise program (APEP) for frail medical acute in-patients . We recruited 40 frail patients who were aged ≥ 65 years, had an anticipated LOS > 3 days, due for discharge home and needed a walking aid on admission. We allocated them to a usual care group (control) or the APEP group, who were assisted with two exercise-sessions daily, Monday-Friday. The research physiotherapist delivered the exercise prescription which included strengthening, balance and endurance exercises.
Results showed a reduction in the median length of stay (LOS) from 12 days (IQR=9-15 days) to 10 days (IQR=8-12 days) (p=0.17, intention-to-treat analysis, p=0.21) in the APEP group. At discharge, they also showed better physical performance (Short Physical Performance Battery, p=0.03) and HRQOL (EQ-5D Activity, p=0.02, Visual Analogue Scale, p=0.001). Exercise adherence was over 68% (SD=26.5%) in the APEP group.
We are now undertaking a RCT to study a larger cohort (220 patients). The aim of this Health Research Board-funded randomised controlled trial (March 2015 – March 2017) is to measure the effects of an augmented prescribed exercise programme on mobility, quality of life and healthcare utilisation for frail medical inpatients in the acute setting. Both arms receive augmented twice daily exercise; the sham arm receive stretching and relaxation exercises and the intervention arm receive a specifically tailored exercise programme.
The primary outcome of this study is to measure is length of stay (healthcare utilisation). The secondary outcome measures include the Short Physical Performance Battery, (includes walking speed) (physical ability), EQ 5D5L (Quality of Life), and re-admission rates (healthcare utilisation). Patients’ walking activity in hospital is measured using an ankle-worn accelerometer (Stepwatch Activity Monitor).
To date, 153 of the 220 patients have been recruited to the study. Blinded discharge assessments have been completed on all but one patient, and approximately 75% of the blinded follow-up assessments.
McCullagh, R., Brady, N., Dillon, C., Horgan, F., & Timmons, S. A review of the accuracy and utility of motion sensors to measure physical activity of frail older hospitalised patients. Journal of Aging and Physical Activity 2015. [Epub ahead of print]. DOI: 10.1123/japa.2014-0190
McCullagh, R., O'Connell, A.-M., Dillon, C., Horgan, F., & Timmons, S. Measurement of Step-Count Accuracy of Three Motion Sensors for Frail Older Hospitalised Patients. (Resubmitted with minor revisions to Archives of Physical Medicine and Rehabilitation).
Ruth McCullagh, Eimear O’Connell, Sarah O’Meara, Ivan Perry, Anthony Fitzgerald, Kieran O’Connor, Anne Marie Keown, Eleanor Bantry-White, N. Frances Horgan, Suzanne Timmons. A study protocol of a randomised controlled trial to measure the effects of an augmented prescribed exercise programme (APEP) for frail older medical patients in the acute setting. BMC Geriatrics, 2015. In Press.
McCullagh R, Dillon C, Dahly D, Horgan NF, Timmons S. Walking in hospital is associated with reduced length of stay in older medical inpatients. Submitted to Physiological Measurement (invited submission), 2015.
The Genio Trust/HSE partnered Cork Integrated Dementia care Across Settings (Cork-IDEAS) project, 2014-2017, aimed at introducing changes in the acute hospital environment and education/ pathways to support better hospital care and integrated community-hospital working for the person with dementia. This project has a consortium of 45 members and several pilot interventions are planned (http://www.genio.ie/news/2013-12-20-grants-approved-for-dementia-programme-2013).
The CARTS (community assessment of risk and treatment strategy) programme is a risk intervention strategy that aims to screen, triage, assess and manage risk of three adverse outcomes (institutionalization, hospitalization, death) among community dwelling older adults. The screening instrument quantifies the impact of multiple predictors of adverse outcomes to generate a unique risk score for each of the three outcomes of interest. The goal of the CARTS programme is to keep older adults healthy, independent and active in their own homes by developing tailored, cost effective health intervention strategies in an expedient way and to manage the factors that are putting older adults at risk.
Let Me Decide Advanced Care Planning Programme
An Irish Hospice Foundation-funded award was granted in 2012 to conduct a pilot study evaluating the implementation of the ‘Let Me Decide’ Advance Care Directive (ACD) in long-term care settings. Subsequently, a further funding award from the Health Research Board was leveraged to undertake a three-year randomised controlled trial (RCT) with a view to expanding this research activity. Working with our colleagues in the School of Nursing and Midwifery, the objective of this study is to evaluate the effectiveness of systematically implementing advance care planning (ACP) with “Let Me Decide” and a palliative care programme (focusing on the educational and resource needs pertaining to end-of-life care) on quality of care at end-of-life in six long-term care facilities in Southern Ireland. This project commenced in 2015 and is currently underway.
The ‘Let Me Decide’ ACD has been implemented in the three intervention homes and positive feedback has been received from the education workshop provided to the programme participant staff. Data collection is actively underway and will be analysed accordingly in due course.
Cork Dementia Study (ODCACS)
The Health Research Board-funded Cork Dementia Study (alias Optimal Dementia Care in Acute Care Settings: ODCACS) recruited 606 people over 70 years of age admitted to six regionally-clustered Irish hospitals and determined the prevalence and outcomes of dementia in acute hospital care, and of delirium/challenging behaviour. All data has been collected and the first papers published.
This study found that dementia was dramatically more common in public hospitals, especially rural hospitals (37%), and in acute, medical patients (p<0.001). Delirium rather than dementia however influenced outcomes, in hospital and at one year. This study, combined with the delirium prodrome study, is the first research to give accurate multi-hospital data in Europe for dementia and delirium, using two robust prospective studies with shared methodology to maximise data transference.
Timmons S, Manning E, Barrett A, Brady N, Browne V, O' Shea E, Molloy DW, O'Regan N, Trawley S, Cahill S, O'Sullivan K, Woods N, Meagher D, Ni Chorcorain A, Linehan J. Dementia in older people admitted to hospital: a regional multi-hospital observational study of prevalence, associations, and case recognition. Age and Ageing Age and Ageing, 2015; 44(6): 993-999. DOI: 10.1093/ageing/afv131.
Brady, N. M., Manning, E., O’Shea, E., O’Regan, N. A., Meagher, D., & Timmons, S. Letter to the Editor: Hospital discharge data-sets grossly under-represent dementia related activity in acute hospitals: a cohort study in five Irish acute hospitals. International Journal of Geriatric PsychiatrY, 2016. DOI: 10.1002/gsp.4478.
Meagher J, Leonard M, Donoghue L, O’Regan N, Timmons S, Exton C, Cullen W, Dunne C, Adamis D, Maclullich AJ, Meagher D. Months backward test: A review of its use in clinical studies. World Journal of Psychiatry. 2015 Sept 22;5(3):305-314.
A Coffey, M Tyrrell, M Buckley, E Manning, V Browne, A Barrett,S Timmons. A multicentre survey of acute hospital nursing staff training in dementia care. Clinical Nursing Studies. 07/2014; 2(4):39-46. DOI: 10.5430/cns.v2n4p39.