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PL2. Technology and e-health

Detailed programme, abstracts and poster presentations

PL2.1. Warm technology and co-design with people with dementia

IJSSELSTEIN Wijnand

Eindhoven University of Technology, Eindhoven, Netherlands

Some of us, as we age, will experience cognitive decline, or worse, the damaging corrosions of dementia. This experience, however, does not define who we are. As we are focusing our scholarly and design efforts to improve the lives of people living with dementia, we are acutely aware that aging does not equate deterioration, even though it may be a part of it. Consequently, our best technology design efforts should not have a singular focus on the support, substitution or amelioration of functional decline, but on better ways of affirming old age – of remaining open and attached to the world and to other people, of ‘staying alive to life itself’ as Lynne Segal (2013) so beautifully put it. In this light, there is a need to reimagine the roles of technology in old age, and to challenge the dominant but problematic rhetoric of technology as a solution to the ‘burden of care’ for an aging population. In this talk, we will highlight the concept of ‘warm technology’, a framing of technology that intentionally challenges the prevalent connotation of technology as rational and efficient, yet impersonal, complicated and disconnected from an individual’s lived experience. We will provide examples of warm technology in the context of dementia care, and discuss the person-centered process of designing for and with people living with dementia – a process based on mutual trust, dignity, and personal history, context and preferences.

PL2.2. What role for “wearables” in the detection of people at risk of dementia and in monitoring disease progression

AARSLAND Dag, OWENS Andrew

King’s College London, London, United Kingdom

Dementia is characterized by impaired cognition and diminishing ability to perform activities of daily living (ADL). In addition, behavioural changes, psychiatric symptoms and motor and autonomic nervous system changes may occur and further impact quality of life. Until recently, measuring these changes relied on direct clinical observation or caregiver recall at discrete intervals, limiting the reliability and sensitivity to changes in function. This is important for early diagnosis, as well as for clinical trials. The enormous advances in healthcare devices, including portal technologies and wireless communications has made it possible to measure function in people’s everyday environment using Remote Measurement Technologies (RMTs), providing the opportunity to capture detailed data over numerous time points. These devices continuously, remotely and relatively unobtrusively record signs and changes, enhancing both the sensitivity and specificity of change in function of the patient. This is a rapidly developing area, with the number of dementia-focused digital technologies increasing rapidly. In addition to measures of physical signs, such as gait velocity, balance, heart rate variability and blood pressure, a number of digital technologies for assessing cognition, mood, and ADL now exist, including smartphone/tablet applications, wearables, and smart homes. For those with cognitive deficits, mobile applications can be used for cognitive monitoring, cognitive assistance and cognitive training. Wearable cameras can also monitor social behaviour. Applying smart home technology can be used to monitor daily functioning across multiple physical, cognitive and psychosocial domains, the latter being particularly difficult to measure sensitively using traditional pen and paper methods. These technologies can help monitoring early disease stages and preserve independence and quality of life of people with dementia, although there are a number of ethical challenges that need to be addressed and solved, including privacy, security, consent capacity, and socioeconomic barriers.

PL2.3. Identifying the needs and views of carers of people with dementia: the online platform of Alzheimer Nederland

BLOM Marco

Alzheimer Nederland, Netherlands

In November 2016, after more than one year of preparation, Alzheimer Nederland launched an online platform to support family caregivers of people with living with dementia. The online platform dementie.nl developed from a more content based platform towards a more interactive platform. In 2017 more than 600.000 unique visitors used the platform. This number grew steadily to almost 1.000.000 in 2018. The number of returning visitors is compared to other platforms relatively high: on average 35%. In building and expanding the online platform we rely very much on the needs and experiences of family caregivers. We organize focus groups to test content and applications during the developmental phase, we monitor use and ask feedback on a frequent basis. Every year we conduct an in-depth survey with user groups of caregivers.

Since the start the online platform aims to help by offering a lot of information and tips (> 260 articles), sharing personal stories (> 60) and experiences and giving access to a variety of professional experts (> 15) who can answer personal questions. Services were expanded by developing an online training for dealing with challenging behaviour, offering a self-test for measuring caregiver burden and implementing an app (MyInlife) to build a supportive network. We also integrated our existing online forum and implemented a ‘call back’ service from our national helpline. Development of the online platform is also strengthened by the partnership with several companies and research institutes. Driving principle behind dementia.nl is the necessity to be relevant to family caregivers and following their needs and experiences throughout the caregiving process. In 2019, we will support even more family caregivers.

PL2.4. Navigating everyday challenges of life-story work with Deaf sign language users with dementia

FERGUSON-COLEMAN Emma, YOUNG Alys, KEADY John

University of Manchester, Manchester, United Kingdom

This presentation will focus on the specific needs of Deaf citizens in the UK.  The capital D in Deaf represents a cultural linguistic minority group that uses sign language, of which there are approx. 87,000 members, as opposed to those who are hard of hearing or whom have lost their hearing later on in life.  Deaf British Sign Language (BSL) users consistently experience unequal access to health and social care provision because their language and communication needs are inadequately met and their cultural identity not recognised by the mainstream.  Inequities of access, service provision and effective outcomes can be exacerbated when Deaf people live with dementia. There is little evidence about the applicability of cultural life-story work with Deaf people with dementia and their families.  This presentation will share findings from work completed in the United Kingdom with Deaf people with dementia and their families. The study took place within the Deaf with Dementia Life-Stories work programme as part of the five year (2014-2019) multi-site ESRC/NIHR funded Neighbourhoods and Dementia study. The main presenter completed Deaf-led data collection in BSL by facilitating two focus groups and six interviews. Data established that Deaf carers are uniquely placed to support their Deaf family member with dementia, as they use innovative visual methods in which to engage conversations.  However, challenges in accessing appropriate support and care after diagnosis superseded the positive construction of cultural life-story work.  These issues will be discussed with potential solutions offered.

 

 
 

Last Updated: Friday 16 August 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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