Introduction
Dementia presents a growing public health challenge in Ireland, where the number of people living with dementia is projected to reach 150,000 by 2045. This rise places significant strain on healthcare systems, informal caregivers, and the broader economy. Currently, dementia care relies heavily on informal family caregiving and expensive nursing home care. The Health Service Executive (HSE) and Alzheimer Society of Ireland (ASI) support a community care model, advocating for high-quality home care services to allow persons with dementia to remain at home as long as possible. Technological solutions offer promising potential to support self-management to allow persons with dementia to live independently for longer, as well as reduce the care burden on families and healthcare systems.
This paper explores the potential role of technology in dementia self-management, offering recommendations to integrate technology into dementia care services in Ireland.
Dementia: A multifaceted public health challenge
Dementia is a progressive neurodegenerative disorder characterised by a decline in cognitive functioning that affects memory, language, reasoning, and the ability to perform daily activities. It primarily affects people aged 65 and over but can also occur in younger individuals (young onset dementia). Often resulting in a loss of independence, changes in behaviour, and social isolation, the disease can have a significant emotional impact on the person living with dementia as well as their informal (unpaid) carers (WHO, 2017). According to the World Health Organisation, more than 55 million people had dementia worldwide in 2023, and, with 10 million new cases diagnosed each year, the figure is expected to rise to 153 million by 2050 (WHO, 2023).
In Ireland, there are an estimated 64,000 people living with dementia (Health Atlas Ireland, 2020). The primary risk factor for dementia is age with prevalence rates nearly doubling every five years over the age of 65, leading to a projected 150,000 cases by 2045, representing 2.5% of the Irish population (Health Atlas Ireland, 2020). Half a million people have a family member with dementia, and informal carers, who make up 6% of the Irish population (CSO, 2022), face a significant care burden, risks to their own health, and also experience social isolation. In 2018, the U.S. Department of Health and Human Services recognised the impact of informal caring as a rising public health concern with the Recognise, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act aimed at ensuring the availability of critical carer supports (Cacchione, 2019).
Globally, dementia costs represent one of the fastest growing economic burdens on healthcare systems in developed countries. People with dementia have higher healthcare usage and costs than those without dementia (Carter, 2022). The estimated global cost of dementia in 2019 was US $1313.4 billion (Wimo, 2023), with this cost expected to rise as prevalence increases. The total economic burden of dementia in Ireland is an estimated €1.9 billion, incorporating both formal and informal care costs (Connolly, 2014).
The majority of people with dementia in Ireland (63%) live at home in the community, and the HSE and ASI believe that people with dementia who want to remain in their own homes should be supported to do so for as long as possible with high quality home care services. From a health services point of view, encouraging people with dementia to live at home is cost effective. The average cost of nursing home care in Ireland is approximately €1,564 per week; this is also set against a backdrop of an acute shortage of nursing home beds in Ireland (Walsh, 2021).
Dementia Diagnosis and Resource Management
The dementia journey spans diagnosis, management, and disease progression, and people living with dementia and their carers require significant and varied resources as they face multiple challenges (Aranda, 2021). A fundamental problem impacting the effective management of dementia is that of late diagnosis, which can ultimately lead to a faster rate of progression of cognitive and functional decline, as well as reduced quality of life (Power, 2023). Research by WHO estimates that 90% of people living with dementia in low- and middle-income countries are unaware that they have dementia (WHO, 2023). However, underdiagnosis is not the preserve of countries of lower income. Dementia is also underdiagnosed in Ireland, where it is estimated that less than 50% of those living with dementia have received a diagnosis (O’Shea, 2018).
As a consequence, missed opportunities prevail for timely interventions and management, as individuals and families struggle to identify or access relevant services and resources. Consequently, stress and anxiety may also be heightened for the individual and their families, further negatively impacting health and wellbeing and contributing to carer burden.
Informal carers of people living with dementia or mild cognitive impairment (MCI) are often juggling multiple demands including physical, emotional and financial challenges. The demands associated with providing full-time and unpaid care are considerable and varied, frequently resulting in feelings of isolation, psychological distress (anxiety, depression, stress), loss of self-esteem, and a tendency to neglect one’s own health and wellbeing due to time constraints and feelings of exhaustion (Sacco, 2022). Carers often experience stress and burnout, due to the progressive nature of dementia and the shifting demands of providing care and support. These issues can then negatively affect the carer’s capacity to provide adequate care, increasing the likelihood of negative health outcomes for both the carer and the care recipient.
Self-Management for People Living with Dementia
In recent years, the concept of self-management for people living with dementia has emerged, defined as “a person-centred approach in which the individual is empowered and has ownership over the management of their life and condition” (DEEP, 2020) and it is recognised that individuals, particularly in earlier stages of dementia, can be supported in self-management (Dixon, 2021). It has also been demonstrated that people living with dementia hold positive views towards assistive technology, are open to exploring its potential in terms of maintaining independence and are receptive to participating in design (Gibson, 2014). Leveraging technology, to deliver interventions and content for the support of dementia symptom management, may offer one solution to ameliorate existing and future dementia resource pressures, for example by delaying progression of the disease for persons living with dementia, whilst also addressing some of the care support needs of informal carers.
Digital health technologies also have potential to alleviate some of the burden associated with caring, by facilitating the provision of care as well as enabling carers to effectively manage their own wellbeing and sustain an optimal quality of life.
However, evidence of the benefits of technology for dementia self-management and to support independence and autonomy is still limited, with most technologies for people living with dementia aiming to address security and safety, followed by memory aids and, finally, treatment and care delivery (Lorenz, 2019). The primary user of these types of technologies is typically the carer, while the person with dementia is often a passive user. There is an acute need, which digital health technologies can potentially fulfil, to provide proactive support for persons with dementia and their caregivers. However, there is limited involvement of people with dementia in the design of technology that could be used to support their personal plans for independent living at home. Our premise is that persons with dementia should be at the centre of decision-making regarding care, with a shift towards active and empowered self-management facilitated by appropriately designed technology.
The Co-Design for Dementia Project
Co-Design for Dementia, a Science Foundation Ireland, National Challenge Fund project (O’Sullivan, 2023), brings together a transdisciplinary team of computer scientists, engineers, social scientists clinical dementia specialists and persons with dementia and their informal carers to co-design and co-create a new holistic digital platform for integrated dementia self-management support. Co-design is a participatory approach that involves developing and testing things with the people who will be directly impacted or who will use the final product. The practice revolves around designing with, rather than for, the end-users, creating authentic spaces for collective decision-making.
Our co-design activities have involved key dementia stakeholders – persons with dementia, their carers, healthcare professionals, dementia support and charity organisations and dementia policy makers. Designing with persons with dementia is essential to create usable technology, because it ensures that the technology is tailored to their unique needs, preferences, and abilities. Involving them directly in the design process helps address cognitive challenges that may not be apparent to developers without lived experience and increases the likelihood that the technology will be intuitive, accessible, and relevant. Co-design also empowers individuals with dementia and their informal carers, giving them a sense of ownership and agency in the technology meant to support their independence and wellbeing.
A crucial factor to consider for proposed technology use is the impact the disease has on individual capacity to learn and retain new information. This has implications for designers with regard to key facets of usability such as learnability and memorability, further highlighting the need for any technology to adapt to the individual’s changing circumstances such that usability and effectiveness are maintained.
Outputs from the co-design activities are being translated into a software platform with two integrated components – a visual application for self-management supported by a suite of passive and on-body sensors for activity tracking.
At the heart of the platform is a visual personalised planner, supporting orientation for persons with dementia and their caregivers. It provides support for managing daily routines by clearly highlighting daily or weekly activities, appointments, and medications, helping to maintain structure and reduce cognitive overload confusion.
As well as routine planning, self-management support incorporates three key area of focus:
Mind: This section offers educational resources on living well with dementia, including brain health interventions and exercises tailored to the user’s cognitive abilities. It includes mindfulness exercises and a memory box feature for reminiscence. These tools can adapt as dementia progresses, ensuring that users have appropriate cognitive support at every stage.
Body: This area promotes physical health, offering education on the importance of regular exercise and physical activity, the ability to set activity goals, and track progress through a smartwatch. It also provides guidance on sleep and rest, with tracking options available. A “My Symptoms” function helps users manage other health conditions by tracking key health parameters like blood glucose levels via digital glucometers for diabetes management. Additionally, it includes medication tracking, with personalised medication lists and schedules for those in the early stages of dementia, and integrated medication management for later stages, typically supported by informal caregivers or formal home care providers, visible on their planner.
Support: This section facilitates access to key contacts, including family, doctors, and care workers. It offers educational resources on staying socially active and signposts users to local services and social activities, as well as available assistive technologies with clear instructions (e.g., video tutorials).
Figure 1: The Co-Design for Dementia Toolkit for Self-Management
The platform also includes a visual interface for carers, dedicated to a planner, to support them in organisation and daily routine management, and that includes activities and appointments for both the person with dementia and themselves. It includes a menu of interventions focused on the carer – mindfulness exercises, carer training, and health and wellbeing monitoring.
During our co-design activities, all stakeholders expressed strong interest in sensor-based technologies for home monitoring, particularly as the condition progresses. Our platform can be integrated with various smart devices that help monitor daily routines and ensure safety within the home. Smartwatches can track sleep and activity levels, while door sensors can monitor activities such as going outside or opening the fridge, helping to ensure individuals are eating properly. Power sensors track the use of household appliances like kettles, offering insights into daily routines, and humidity sensors monitor temperature changes, such as those in the shower or bathroom, to detect personal hygiene activities. Together, these devices provide a comprehensive picture of daily living, enabling caregivers and family members to ensure that key activities are being completed without intruding on the person’s independence. In addition to monitoring, we have integrated voice technology to offer proactive and reactive support, helping to make day-to-day life more manageable for persons with dementia. Our platform is integrated with Google Assistant to allow for voice-based prompts and interactions, providing reminders about daily activities like taking medication, attending appointments, or going for a walk. Voice notifications can also alert users to potential safety concerns, such as a door or window left open, and voice commands can be used to control smart devices like lights, promoting a safe home environment. This type of automation not only supports persons with dementia in maintaining their routines but also offers peace of mind to caregivers, especially those providing care remotely, by reducing their burden while ensuring the person’s safety and wellbeing.
It is worth noting, that even with the greatest motivation, the progression of cognitive deterioration is likely to affect the ability of a person with dementia to continue engaging with a technology in a manner that is useful and effective. As such, it is probable the carer will become the primary user of the technology as dementia progresses. The platform has been designed to be flexible with these changing needs, shifting the focus to providing more carer-oriented tools, such as monitoring insights, medication management, and automated alerts. This ensures that the technology remains useful and effective, adapting from a self-management tool for the person with dementia to a caregiving aid, enabling the carer to manage daily routines, track health metrics, and maintain a safe environment, all while reducing caregiver burden.
Recommendations for Policy
This section outlines key recommendations for policy development aimed at technology for self-management in dementia care, promoting independent living and enhancing carer support.
Public Awareness
Public awareness campaigns on dementia should focus on raising awareness about the condition—explaining what dementia is and helping the public to recognise early warning signs such as memory loss, confusion, difficulty with language, and changes in mood or behaviour. Additionally, these campaigns should educate the public about the importance of early intervention in maintaining quality of life, as timely treatment and support can slow progression and improve outcomes. Campaigns can also highlight how technology, such as memory aids, apps, and smart home devices, can be effectively used for dementia self-management and to support independent living.
Early recommendation of technology-based support
The HSE model of care for dementia outlines three levels of assessment: 1. Assessment in Primary Care, 2: Assessment in a Memory Assessment and Support Service (MASS) or other Specialist Services, 3: Assessment in a Regional Specialist Memory Clinic (RSMC). Persons with a diagnosis are not routinely directed towards technology-based support for self-management. However, those diagnosed with mild cognitive impairment (MCI) or in the early stages of dementia should consistently be directed to assistive technology resources.
Furthermore, it would be beneficial to recommend technology use for individuals with MCI or when cognitive decline is suspected, even before a formal diagnosis is made. For example, if a GP or clinician identifies possible cognitive impairment or confirms an MCI diagnosis, early technological intervention could help to slow symptom progression while awaiting a full diagnosis.
Signposts to available assistive technologies and how to use it
To effectively incorporate technology-based support, there is a need for an inventory of assistive technologies that can support dementia self-management. Ideally, this would be complemented by an expanded network of specialist services, such as Memory Technology Resource Rooms (MTRR) in communities across the country, to promote awareness and facilitate access to these technologies. These services should also include provisions for training and ongoing support. Often, technologies are recommended or provided but remain underutilised due to insufficient user training and guidance.
Accessibility and Affordability
Technology solutions should be affordable and accessible to all individuals with dementia, regardless of socioeconomic status. This could involve subsidising the cost of assistive technologies, offering incentives for carers who invest in technology, and ensuring that rural areas have access to the necessary infrastructure (e.g., broadband) to support remote monitoring.
Foster Public-Private Partnerships
Collaboration between the public and private sectors will be important in driving innovation and ensuring the widespread adoption of technology in dementia care. The government should encourage partnerships between technology companies, healthcare providers, academic researchers and dementia advocacy organisations to develop and deploy new solutions.
Monitor and Evaluate Outcomes
Ongoing monitoring and evaluation of technology-based solutions are essential to ensure their effectiveness. Mechanisms for collecting data on health outcomes, cost savings, and caregiver satisfaction should be established. This data can inform future policy decisions and ensure that the most effective solutions are prioritised for scaling up.
Conclusion
Dementia is one of Ireland’s most pressing public health challenges, with profound medical, social, and economic implications. As the number of people with dementia continues to rise, the country’s healthcare system must adapt to meet the growing demand for care. Technological innovations offer a promising solution, enabling individuals to manage their condition at home, reducing the burden on carers, and lowering overall costs.
To achieve this, a multi-faceted approach is required, from building public awareness, developing accessible specialised services like MMTRs including training for end-users, and encouraging public-private partnerships to drive innovation and ensure the sustainable deployment of technology. Monitoring and evaluation of initiatives is also required so that policymakers can refine strategies and ensure that the most effective solutions are prioritised, ultimately leading to improved health outcomes and enhanced quality of life for those affected by dementia.
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