A Dementia Framework

This Dementia Framework was developed to identify how we need to develop policies to help individuals with varying cognitive deficits, especially people living alone or in nursing homes who don’t have personal care.

“Dementia is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person’s daily life and activities” [1]. As the proportion of older people and life expectancy is increasing in nearly every country, Dementia is Expected to Grow Rapidly Through 2050.

In the last 20 years, Alzheimer’s has seen a 145% increase in the number of deaths, whereas other diseases have seen a decrease.

Dementia and other cognitive deficits are not just a problem in one country, it’s been a worldwide issue, and very few countries have a national-level plan to tackle Dementia.

Let's talk about the framework, the first step is to identify the different stakeholders involved. The major stakeholders are Dementia patients, family, caregivers, technologies, lawmakers, doctors, drug manufacturers, NGOs. We need to identify all stakeholders who are involved in Dementia and solving Dementia and invest in relationship making to understand the requirements and solutions. This can be done at grassroots and higher administrative levels.

The four major sectors where policies must impact are developing better relationships and Architecture; creating awareness and improving the Norms among people; developing better Laws to support technological and non-technological advances; improve Markets to test and deploy advancements in medicine and technology for Dementia.

There is a fifth sector — Education and Information.

Education is very important to help understand the impact of Dementia. Dementia Friends in USA and UK is a global movement that is changing the way people think, act, and talk about dementia. Similarly, other efforts have to be made to educate the general public about Dementia. So I developed a few infographics and used a few to inform them about Dementia.

Understanding the important differences between MCI and Dementia.

Dementia policies and efforts around the world.

At ASU,

Mirabella at ASU

PERACTIV [25] is a wearable technology designed to track the movements of the hand and fingers and generate a video stream of the activities performed and the immediate environment. The device is wrist-worn, lightweight, low-cost, scalable, unobtrusive, and easy to use. It comprises a printed circuit board, camera, housing, and wrist cuff.

The camera is aimed at the user’s hand and fingers, providing a detailed view of the palm and fingers used for fine interactions with different objects. The wrist-mounted camera captures panoramic views of the locale along with the fingers and palm. Wrist-mounted cameras provide the ability to observe the movements of the hand and its interactions consistently.

The wrist-worn device's structural components comprise a microcontroller unit, various sensory modules such as the camera, IMU, etc., and other essential components such as a battery, memory, on-board storage, expandable storage, and telemetry in terms of WiFi and Bluetooth adapters. The micro-controller unit handles on-device user interactions through the onboard input and output interfaces. It connects to all the sensory modules and communicates with a mobile application executable by a mobile phone or other mobile devices through the telemetry unit.

The device tracks the movements of the wrist, hands, and fingers while producing a video feed of the hand and fingers and their immediate surroundings. The wrist-worn camera device can be equipped with Near-Field Communication (NFC), Bluetooth beacons, GPS, pressure sensors, and many other sensors to increase functionality and use cases.

PERACTIV Device showing the view during pill-taking activity.

Things to keep in mind while developing technologies for older people.

Adopting new technologies for older adults.

This framework is just an introduction, and I invite you to discuss and develop better frameworks and policies to help people suffering from Dementia and make countries ready to defend against the increasing population of Dementia patients.

*This framework is developed as part of the Introduction to Policy Informatics course at ASU taught by Dr. Erik Johnston.

This blog was made possible thanks to the generous support of the National Science Foundation (NSF) through Grant Award Number 2142774.

REFERENCES:

1. https://www.nia.nih.gov/health/what-is-dementia
2. https://www.nia.nih.gov/health/what-alzheimers-disease
3. https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/symptoms-causes/syc-20354578
4. https://www.nia.nih.gov/health/what-mild-cognitive-impairment
5. https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis
6. https://www.healthline.com/health/is-it-mild-cognitive-impairment-or-something-else#MCI-vs.-dementia-vs.-healthy-aging
7. https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder
8. https://pubmed.ncbi.nlm.nih.gov/26996178/
9. https://www.alzheimersresearchuk.org/dementia-information/
10. https://dementiapartnerships.com/
11. https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1002271
12. https://alzres.biomedcentral.com/articles/10.1186/alzrt205
13. https://healthpolicy-watch.news/few-countries-have-plan-to-support-people-with-dementia/
14. https://www.kindlycare.com/mild-cognitive-impairment/
15. https://www.mentalhealth.org.uk/sites/default/files/dementia-rights-policy-discussion.pdf
16. https://www.alzheimers.org.uk/sites/default/files/2019-06/APPG_on_Dementia_2019_report_Hidden_no_more_dementia_and_disability_media.pdf
17. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf
18. https://worlddementiacouncil.org/sites/default/files/2018-12/Defeating%20Dementia%20Report.pdf
19. https://engineering.asu.edu/fall2020/storytelling-robots-set-to-provide-dementia-relief
20. https://news.asu.edu/20200924-edson-seed-grants-advance-innovative-dementia-solutions
21. Dementia Friends
22. Mirabella
23. https://neuroethicscanada.wordpress.com/2021/06/22/dementia-technology-policies-benefits-are-clear-but-what-about-the-harms/
24. Robillard JM, Wu JM, Feng TL, Tam MT. Prioritizing Benefits: A Content Analysis of the Ethics in Dementia Technology Policies. J Alzheimers Dis. 2019;69(4):897–904.
25. Vishnu Kakaraparthi, Troy McDaniel, Hemanth Venkateswara, and Morris Goldberg. 2022. PERACTIV: Personalized Activity Monitoring — Ask My Hands. In Distributed, Ambient and Pervasive Interactions. Smart Living, Learning, Well-being and Health, Art and Creativity: 10th International Conference, DAPI 2022, Held as Part of the 24th HCI International Conference, HCII 2022, Virtual Event, June 26 — July 1, 2022, Proceedings, Part II. Springer-Verlag, Berlin, Heidelberg, 255–272. https://doi.org/10.1007/978-3-031-05431-0_18