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According to the 2022 Alzheimer’s Association Facts and Figures, more than 6 million Americans have Alzheimer disease and related dementias. They are cared for by millions of family members, friends, or other unpaid caregivers. Communication deficits are common among persons with Alzheimer disease and related dementias and pose challenges to caregiving and clinical care, which is already complex. An interdisciplinary team developed a mobile app prototype to improve communications between people living with dementia and their caregivers and providers and to promote person-centered care. This viewpoint paper provides a road map for how the interdisciplinary team worked together to develop and plan for the implementation and evaluation of a new evidence-based app. In our paper, we provide an 8-step process used by a team of clinicians, researchers, and software engineers to develop a new app to meet the needs of people living with dementia and their caregiver(s). The planned clinical trial has been registered at ClinicalTrials.gov (NCT04571502; https://clinicaltrials.gov/ct2/show/NCT04571502).
RR2-10.3928/19404921-20210825-02
People living with dementia often experience communication deficits due to a variety of symptoms associated with Alzheimer disease and related dementias, including memory loss, primary progressive aphasia, decreased attention span, and word-retrieval anomia [
Prior research has found that augmentative and alternative communication (AAC) devices can effectively support people living with dementia in communicating [
The focus of this overall project was to develop an electronic AAC device for people living with dementia that aims to (1) support them in communicating their daily care preferences and needs with caregivers; (2) communicate their everyday experiences and behaviors with caregivers; (3) share information about these experiences and behaviors with providers involved with their care; and (4) provide the caregivers with the ability to easily update information, with internet access.
The newly developed
Screenshots of Mary’s preferences for breakfast and clothes. My PATI: My Person Assisted Touchscreen Interface.
Mary is 80 years old, has multiple medical problems, and was diagnosed with vascular dementia 6 years ago. Mary is often confused and anxious and does not sleep well. Her family, including her live-in son, makes every effort to let the daily paid nursing assistants know Mary’s care preferences (eg, types of food, clothing, and grooming), interests (eg, preferred TV shows, music, daily walks, and manicures), and abilities (eg, able to select her clothing and style her hair). Mary has significant verbal communication deficits. Therefore, she often communicates through single words or short phrases, which frequently results in family members and in-home caregivers not giving Mary a choice on what to wear, eat, or do for her daily activities, despite their good intentions for her daily care. Sometimes Mary exhibits care-resistant behaviors (eg, aggression and lack of cooperation) when she seems unhappy with food or clothing suggestions. Using
From the perspective of a speech-language pathologist,
As PCC has become the gold standard of care, an increasing number of technologies that support the autonomy of people living with dementia have emerged, including monitoring technologies for the safety of people living with dementia, robotics, therapeutic technologies, and various apps to support brain and mental health [
Moving from the traditional paper format of an AAC device or memory aid for people living with dementia to an electronic version requires experts from multiple disciplines, including nursing, social work, physical therapy, speech therapy, and software engineering. Interdisciplinary development teams can sometimes encounter challenges when health and social scientists collaborate with engineers. For example, health and social scientists may not understand the capabilities or limitations of technologies, and engineering members may not understand the context of health and social problems being addressed. There are no easy answers on how to address these barriers. Still, an agreed-upon stepwise process that allows for regular opportunities for groups to talk about issues and share progress is helpful.
To develop
The underlying principle for developing
Multistep process used to develop and evaluate My Person Assisted Touchscreen Interface (My PATI).
An
The development and decisions regarding
The design of the
For the more detailed design, the UX experts incorporated UX design best practices, including conducting in-depth formative and substantive UX research throughout the development process [
As described above, the software engineering team built the prototype using the requirements provided by the health care experts and interpreted by the UI/UX experts. The requirements were captured using structured natural language as use cases. The
The research team then had the clinical experts review the prototype. It was initially determined that the graphic icons used for the app may not adequately reflect the feature or function that the icon represented (eg, music library and video library). The research team then consulted with an artist with UI/UX experience. The clinical team then engaged in a series of meetings with the artist to provide their clinical input about the various aspects of the icon (eg, the significance of the icon and its appropriateness for people living with dementia). The artist then redesigned the icons, which were integrated into the prototype. When this process was complete, the team continued steps 1 through 4 until consensus was reached on icon design.
User studies with both people living with dementia and caregivers have been conducted following approval from an Institutional Review Board (IRB-21-0527). For potential end user feedback, we implemented a participatory research design with persons with moderate cognitive impairment (defined as a recent Montreal Cognitive Assessment score of 10-17 or Mini-Mental State Exam score of 13-20) and caregivers at a collaborating memory clinic. The provided data revealed potential navigation issues, and our team made modifications to simplify navigation based on these findings. The protocol was structured and developed jointly by clinicians, researchers, and software engineers, and interviews were audio recorded. During the interview of the person living with dementia, we evaluated if the
To date, for these participants, there was agreement between the snack choice made with the
Interviewer: “Now I am going to ask you about things you ordinarily like to eat and drink.”
Show the person living with dementia the 2 snack options, pointing to each but not touching the iPad.
Interviewer: “What do you ordinarily like to eat?”
Hold the iPad while the participant selects their choice or if the participant verbally states their response, select their response for them. Once a selection is made, put the iPad down and bring out the physical snacks (ie, identical to images on the iPad) while stating the following.
Interviewer: “I have a couple of snacks. Which of these snacks do you prefer?”
Document the selected snack.
This step is similar to step 4, where the clinical experts will review the results from the user study and make recommendations for interface revision (if deemed necessary), which would be followed by steps 1-4 again.
A small pilot will be conducted in preparation for the planned clinical trial (see step 8). These findings will be used to make necessary changes to
Samantha: “Good Morning, Grandma. How are you feeling today?”
Grandma Mary: (smiles at Samantha)
Samantha: “Grandma, we have a doctor’s appointment later this morning. What would you like to wear today?”
Samantha shows Mary photos of her clothes displayed on
Samantha: “Nice choice, Grandma! You will look very pretty for the doctor. Let’s get ready.”
Samantha helps her grandmother stand up, and they move off together to get dressed.
A trial is planned to commence in the spring of 2024 with triads of people living with dementia, caregivers, and their health care providers [
There are several limitations of the 8-step approach presented in this paper and adjustments that should be made if the process was repeated. First, most the team had previously worked together on the development and testing of another dementia caregiver app before developing
This paper provides a road map for implementing an interprofessional practice approach to developing an evidence-based app,
augmentative and alternative communication
activities of daily living
instrumental activities of daily living
My Person Assisted Technology Interface
person-centered care
user experience
user interface
Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under award R01AG068572. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors would also like to acknowledge support from ELB’s Erica Wertheim Zohar Endowed Chair in Community Mental Health (training video) and the creative contribution from Mr Bernardo Arroyo (
None declared.