Use of smartphones in dementia

• Research type

  Research Study

• Full title

  Assistive Technology in Dementia: exploring the views and experiences of patients and their carers of smartphones - a national survey

• IRAS ID

  303788

• Contact name

  Robert Barber

• Contact email

  Robert.Barber@cntw.nhs.uk

• Sponsor organisation

  CNTW NHS FT

• Duration of Study in the UK

  1 years, 0 months, 0 days

• Research summary

  Summary of Research
  1. Aim:
  To undertake a national survey of people with dementia and their carers to explore their experiences and opinions relating to the use of assistive technology – specifically smartphones in dementia.

  2. Background: Digital technologies are increasingly used in the way health and social care are delivered, and by people to help manage their health and welfare needs. If new technologies and related innovations are to be successfully applied to support people with dementia (PwD), it is important to understand the views and needs of PwD alongside those of their carers. This is an under researched area and this study focuses on one of the most widely available forms of technologies – namely the smartphone to better understand how these devices are used by PwD and their carers.

  3. Method:
  A survey will be sent to volunteers with dementia and their carers who have signed-up to the NHS National institute for Health Research (NIHR) “Join Dementia Research” (JDR) website (https://www.joindementiaresearch.nihr.ac.uk/).Currently, JDR has over 49,500 volunteers of which approximately 5000 have a diagnosis of dementia (all types, any severity) and 8,500 are carers of someone with dementia.

  Consent to approach is verified by JDR registration. Consent is assumed by self-completion of the proposed survey. Participants will be free to choose whether they wish to respond. Surveys will be returned anonymously.

  4. Future:
  Findings from the survey will be published and shared with key stakeholders as appropriate.
  The results will be relevant to NHS, social care, charities, patients and their carers to inform future practice and processes.

  Summary of Results
  Study Summary

  The study aimed to undertake a national survey of people with dementia and their carers to explore their experiences and opinions relating to the use of assistive technology – specifically smartphones in dementia. A survey was sent to volunteers with dementia and their carers who had previously signed-up to the NHS National institute for Health Research (NIHR) “Join Dementia Research” (JDR) platform. In addition, volunteers with a diagnosis of dementia and their carers registered on the North East North Cumbria (NENC) DeNDRoN Research Case Register held within Cumbria Northumberland Tyne and Wear NHS Foundation Trust were also invited to complete the survey. We received a total of 276 responses from people with dementia (PwD) and 443 from carers supporting PwD.

  1. People with dementia recruited via the JDR platform

  1.1 Survey Engagement and Technology Utilisation: The survey was shared via the JDR platform, with a high response rate of n=242. A substantial 83% of respondents reported using smartphones. These devices were primarily utilised to manage daily challenges related to their dementia, such as using applications for memory assistance and scheduling, along with some activities for entertainment purposes. Key functionalities highlighted included using apps to set reminders, participate in social media, and access medical information online.
  1.2 Challenges Faced: Despite the high rate of technology adoption, nearly half of the participants encountered significant usability issues. The main barriers included the complexity of modern smartphones, difficulties due to the small size of text and buttons, and the cognitive load required to navigate new technology. These challenges often led to frustration and underutilisation of potentially beneficial features.
  1.3 Future Prospects: Looking forward, 46% of this group expressed reservations about using technology for more advanced purposes like enhancing personal safety or furthering independence, primarily due to the existing usability challenges. This highlights a critical need for the development of more intuitive, user-friendly technology solutions that address the specific limitations faced by those living with dementia.

  2. PwD via Case Register (PwD_CR)

  2.2 Engagement and Slightly Lower Technology Use: The PwD_CR group showed good levels of participation with n= 34 completing the survey from a total of 45 that were approached. However, their use of technology, particularly smartphones, was slightly lower at 68%. Those who did use smartphones often utilised them similarly to the larger PwD group but faced more pronounced challenges, possibly due to older age or more advanced disease symptoms.
  2.3 Conservatism Towards New Technology: There was a noticeable conservatism towards the adoption of new technology within this group. Many preferred simpler devices and were hesitant to transition to more complex technologies. This trend suggests a gap in the market for high-accessibility devices that cater specifically to the needs of older or more impaired users.
  2.4 Barriers and Needs: The primary barriers for this group included physical usability issues, cognitive challenges associated with using new technologies, and financial constraints. These factors necessitate a strategic focus on creating cost-effective, easy-to-use devices that enhance, rather than complicate, daily living.

  3. Combined data from PwD via JDR and Research Case Register:
  3.1 Aggregated Insights and Technology Integration: Combining the datasets of the PwD recruited from both JDR and the research case register illuminates the central role of technology in managing dementia. Approximately 75% of the combined group used technology, primarily smartphones, to mitigate the daily challenges posed by dementia such as memory prompts, schedule appointments, and keeping track of health information.

  3.2 Common Challenges: The merged analysis also highlights shared difficulties, with nearly 50% of all participants citing usability issues, such as small interface elements and complex navigation, as major barriers. These shared challenges stress the need for designing technologies that are not only functional but also accessible and easy to use for individuals with varying degrees of technological proficiency and cognitive ability.

  3.3 Future Integration and Needs: While there is a solid foundation of current technology use, there is noticeable hesitance about embracing newer technologies, particularly among 40% of the combined group. This hesitance often stems from concerns over increased complexity and potential over-reliance on digital solutions which may not always be reliable or user-friendly. The insights call for a balanced approach to technology development, where new innovations are matched with ease of use and real-world applicability, ensuring they add value without adding burden.

  4. Carers via JDR
  4.1 High Engagement and Active Technology Use: Carer engagement with the survey was also positive with a good response rate of n=418, reflecting their active role in seeking resources and support through technology. Around 80% used digital tools extensively, particularly for communication with healthcare providers, managing medication schedules, and accessing online support groups.
  4.2 Challenges in Technology Use: Carers identified several barriers to effective technology use, including high costs, complexity of devices, and a lack of specific features tailored to caregiving needs. These challenges often led to stress and decreased efficiency in managing caregiving responsibilities.
  4.3 Looking Forward: While there was interest in using technology for enhancing caregiving practices, about 35% were hesitant to adopt new tools due to fears of increased complexity and the potential for technology to become more of a burden than a benefit. This highlights the need for developing caregiving-specific technologies that are both innovative and simple to use.

  5. Carers via Case Register (Carer_CR)
  5.1 Dedicated Participation and Specific Needs: The Carer_CR group, like their counterparts, showed good participation with n=25 out of 25 approached to take part. Their technology use was slightly less than that of carer participants via JDR, potentially reflecting differences in demographics or resource availability. This group particularly highlighted the need for straightforward, reliable tools that support their caregiving activities without adding to their workload.
  5.2 Cautious but Interested in Practical Solutions: Similar to the JDR group, carers recruited via the register were cautious about new technologies. Over half noted a preference for tried-and-true methods over new and untested technologies, suggesting a significant demand for user-friendly, robust, and practical technological solutions that can genuinely assist in caregiving.

  6. Combined data from Carers via JDR and Research Case Register:
  6.1 Unified Caregiving Experience: The merged responses from the carer groups provide a nuanced view of how caregivers use technology to facilitate their responsibilities. Overall, 75% of caregivers across both groups employed technology in some form, using it for tasks such as medication management, appointment scheduling, and emergency communication. The combined data underline the indispensable role of digital tools in modern caregiving.
  6.2 Shared Barriers and Technological Gaps: Challenges with complexity and cost are recurrent themes, reported by 65% of the entire caregiving group. These issues highlight the gap between available technology and the specific needs of caregivers, who often require more streamlined, cost-effective solutions that can be integrated seamlessly into daily routines.
  6.3 Prospects for Enhanced Caregiving Tools: While there is a moderate interest in adopting new technologies (approximately 35% open to it), there is also significant caution. This caution is reflective of a broader concern about the practicality of integrating advanced technologies into existing caregiving practices. Caregivers express a need for technologies that are not only innovative but also provide tangible benefits without adding complexity or requiring significant new learning.
  6.4 Pathway Forward: The insights from the combined carer data advocate for the development of targeted solutions that cater specifically to the needs of caregivers. These include intuitive user interfaces, affordable pricing models, and robust functionality that can withstand the demands of caregiving scenarios. Additionally, there is a notable demand for technologies that can provide emotional support and reduce the isolation often experienced by caregivers, such as through networks or platforms that facilitate community interaction to aid sharing of experiences and signposting to other helpful resources/support.

• REC name

  HSC REC A

• REC reference

  22/NI/0015

• Date of REC Opinion

  17 Jan 2022

• REC opinion

  Further Information Favourable Opinion