PD-Life
Prof. Suzanne Timmons is Project Lead and Dr. Emma O'Shea is Co-I on PD-Life.
The development of an all-island research hub for Parkinson’s disease (PD) and protecting the operation of critical infrastructure from cyber-attacks are the two major projects that University College Cork (UCC) researchers will lead and partner on through the North-South Research Programme (NSRP).
The first all-island research hub for Parkinson’s disease
PD is the world’s fastest-growing brain disease. It affects 19,200 people across all of Ireland and is expected to double by 2050. Led by Professor Suzanne Timmons, Head of the Centre for Gerontology and Rehabilitation in the School of Medicine at UCC, the PD-Life project has received €4m to create the first all-island PD research hub, through an all-Ireland, multidisciplinary, multi-institutional approach, and will significantly enhance the wellbeing and quality of life for people living with PD.
The PD research hub will build on existing research skills and knowledge across three linked projects, shaped by the key priorities for people with PD, and by global research priorities:
- Stigma - looking at how facial expression and speech problems affect others’ opinions.
- Mental Health - looking at unmet needs, how people cope, and how it affects healthy-living choices.
- Physical Activity - helping people with PD to start and continue exercise and dance, and examining how this affects health.
The PD research hub will bring together researchers from six third level institutions and research institutes (UCC, Tyndall National Institute, Trinity College Dublin, University of Limerick, Queen’s University Belfast and the University of Ulster), healthcare partners, and PD support organisations such as Parkinson’s Ireland and the Parkinson’s UK Northern Ireland branch.
Lead researcher Professor Suzanne Timmons said: "This research will raise public awareness of PD and reduce stigma and misunderstandings. It will produce key evidence and resources to be used for policy and clinical practice to improve the quality of life for people living with Parkinson’s. Together, we aim to make Ireland an excellent location for world-leading Parkinson’s research and for people living with PD."
InTouch
Prof. Suzanne Timmons is co-coordinator of the In-Touch consortium on Dementia Palliative Care.
The In-Touch project, funded with €7.5 million from the EU, aims to enhance the quality of life for individuals with advanced dementia. Led by the University College of Cork (UCC), a research group of 13 institutions across the EU, UK, and Canada, will investigate a comprehensive, non-pharmacological intervention for dementia.
This study will be trialled in 56 care homes across seven countries, focusing on palliative care, staff training, and improving well-being, through tailored, multi-sensory activities for residents and their families.
The In-Touch project represents a significant step forward in the care of individuals with advanced dementia in Europe. By developing innovative, non-pharmacological interventions that prioritise comfort, quality of life, and social engagement, the project aims to transform the care experience for residents and their families. Through its comprehensive training program, the project also empowers care staff to deliver more personalised and compassionate support, creating a ripple effect of positive change throughout the nursing homes sector.
AI4HOPE
Prof. Suzanne Timmons is a Co-I on the AI4HOPE Horizon Europe Project, which is led by University of Turku (Finland). Prof. Timmons and Dr. Kseniya Simbirtseva (Research Fellow) lead CGR's work on the project.
Dementia is a leading cause of disability and can have significant impact on quality of life. In addition to progressive cognitive decline, people with dementia frequently experience non-cognitive (e.g. behavioural, psychological and bodily) symptoms, including agitation, anxiety, depression, delusions or pain. Palliative care is an approach that helps alleviate distress caused by such symptoms and improves the quality of life of people with a life-threatening or changing medical condition such as dementia (as well as of their loved ones). It is not limited to end-of-life care. Recent technological advances (such as the advent of artificial intelligence, AI) may present valuable assets for palliative care. The Artificial Intelligence Based Health, Optimism, Purpose, and Endurance in Palliative Care for Dementia (AI4HOPE) aims to leverage such advances to develop a novel AI-based palliative care ecosystem to support caregivers and people with dementia.
More specifically, AI4HOPE focuses on building and evaluating an innovative Advanced Care Planning Decision Support System (CPDSS), paired with virtual-reality based multisensory emotion regulation and pain management. This system should both help understand non-cognitive symptoms of dementia and form the basis for guidelines and policy recommendations. For this undertaking to be successful, the AI4HOPE project team brings together partners from different research disciplines (technical, natural and social sciences), clinical organizations, and policy and patient organizations, as well as industry. Clinical evaluation of the CPDSS will be conducted at five pilots sites, located in Germany, the United Kingdom, Spain, Ireland and Slovenia, involving 250 people with dementia.
AI4HOPE receives funding from the European Union’s Horizon Europe research and innovation programme (grant agreement no. 101136769).
TeamUp For Dementia Research
TeamUp for Dementia Research is a service where people living with dementia and their families can register their interest in participating in dementia research. It connects you with researchers who are conducting studies in the area of dementia (e.g. prevention, diagnosis, treatment, care, cure). With our team at CGR being commissioned to deliver an independent evaluation of the service.
Commissioned by The Alzheimer Society of Ireland and undertaken by L. O’Mahony, S. Fox, S. Timmons, and E. O’Shea at the Centre for Gerontology and Rehabilitation, University College Cork, the independent evaluation explored the experiences of members, researchers and stakeholders.
It provides valuable insights into the impact of the TUDR service and highlights the important role it plays in connecting people affected by dementia with research opportunities across Ireland.
Using a mixed-methods approach, the evaluation gathered feedback from a wide range of stakeholders, including people living with dementia, family carers, researchers, academics, ASI staff and management, and health and advocacy professionals.
ENCIRCLE-PC
Evaluation of the Day Care at Home Service
Day Care at Home is a service provided by The Alzheimer Society of Ireland (ASI) to people with dementia and their families since 2020 and is funded by the HSE. It is delivered by trained staff in the client’s home in blocks of hours (usually two hours). The emphasis is on the service meeting social and recreational needs, rather than being task-led, is a defining feature.
The ASI have commissioned the Centre for Gerontology & Rehabilitation to conduct an independent evaluation of this service. The work is led by Dr Emma O’Shea.
This evaluation will speak to the following:
- The impact, value, and experience of the Day Care at Home service for family carers of people with dementia.
- How the Day Care at Home service fits into the overall dementia care and support landscape, particularly from the perspective of choice and options.
- How the Day Care at Home service impacts integration into other services and supports both internally and externally.
- Optimal service delivery methods and a client’s journey through the service.
- Areas for development and improvement.
- The potential for Day Care at Home to address the unique needs of people with Young Onset Dementia and their families.
- How the Day Care at Home service is perceived in relation to other services (e.g., Home Care and Day Care Centres) by people affected by dementia and other stakeholders.
Importantly, this evaluation will include the range of key actors with a stake in this service. The evaluation will include the following perspectives:
- People who use the Day Care at Home service.
- Families of people who use the Day Care at Home service.
- ASI staff who are involved in delivering Day Care at Home (at all levels).
- External health and social care stakeholders, including funders.
- People who choose not to use the Day Care at Home service and prefer to attend Day Centres.
If you are interested in hearing more about this upcoming project, contact Dr Emma O Shea
SOLARBIOME
The SOLARBIOME project is funded by the Science Foundation Ireland Future Innovator Prize.
What is it about?
The SOLARBIOME project aims to promote healthy ageing through the optimisation of diet with the development of a novel functional food product, bridging food science, microbiology innovation and societal engagement. Professor Suzanne Timmons from the Centre for Gerontology and Rehabilitation is involved as an expert gerontologist in the project, alongside microbiologist Professor Paul O’Toole (project lead) and food scientist Professor Elke Arendt.
Why is this research important?
People are living longer but not necessarily healthier; lifestyle choices in middle age and younger old age can play a key role in determining how a person ages over the following decades. Recent scientific evidence shows that harnessing key nutrients from the Mediterranean diet, promoting a healthy gut microbiota, can have health benefits in later life. The project also addresses an increasingly important food challenge, as buying large quantities of fresh food such as fruit and vegetables can lead to food waste, potentially impeding older people from achieving nutritional and health goals. A new food product could overcome these dual challenges.
What did we do?
We interviewed 45 older adults (aged over 55 years) and 25 healthcare professionals and other key stakeholders (e.g. geriatricians, dieticians, pharmacists, clinical therapists, nursing staff, catering managers) from July 2021 to January 2022. We wanted to explore: 1) dietary influences and preferences in food choice for older adults in Ireland; 2) awareness of gut microbiota and the Mediterranean diet for healthy ageing; 3) preferences and values in relation to a potential new food product.
What did we learn?
From this process, we have gathered insights on dietary influences and food preferences for middle aged and older adults in Ireland, and perspectives on novel food products with health benefits, and on food waste challenges. Some outputs from this project are listed below.
The project team are now developing and testing the new food product, based on what our stakeholders told us. We will add the link to this side of the project as it progresses.
The following infographics summarise the key study findings in relation to:
- What influences diet and food choice for older adults in Ireland
- Awareness of gut microbiota and the Mediterranean Diet for healthy ageing
- Stakeholder perspectives of using food products to support healthy ageing
More information
For more information on this research contact the Centre for Gerontology & Rehabilitation or email Professor Suzanne Timmons at s.timmons@ucc.ie
SustainCare
Factors influencing the sustainability of family caregiving in dementia: A multiphase qualitative study.
Families provide the bulk of community-based dementia care. Evidence suggests that over 60% of people with dementia in Ireland are living in the community, supported by their families.
Together with Family Carers Ireland, we designed and conducted a study to better understand the factors influencing the sustainability of supporting a family member with dementia to remain living at home in the community.
We approach this project from a 'family systems' perspective, conducting twenty qualitative interviews across 10 families supporting a person with dementia in Ireland. All participants were ≥18 years of age and aware of the dementia diagnosis.
The findings showed that there were six superordinate elements influenced sustainability, relating to: The Person with Dementia; The Primary Carer(s); Family Network and Dynamics; Local Community; Formal Health and Social Care Services; and Wider Socio-cultural and political factors.
From a family systems perspective, these six elements differentially impacted upon four cross-cutting conceptual themes, each of which are discussed in detail: 1) Values & Expectations; 2) Family Roles, Relationships and Dynamics; 3) Individual & Collective Capacity; and 4) Contextual Factors (including the impact COVID-19).
Thus, this study identified factors influencing the sustainability of caring for a family member with dementia, with a specific focus on the family system as the unit of care. Better supporting resilience at a family-level will require dedicated resources and defined actions on the part of several stakeholder groups. Implications are discussed for families, clinicians, policy- and decision-makers, and service planners/ providers.
The full report can be accessed here.
This project was kindly funded by the Irish Research Council.
SENDoc
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.
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.
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 here.