Abstract
BACKGROUND:
There is growing evidence that assistive digital technology can enhance quality of life (QOL) for individuals with various forms of cognitive impairment, including dementia.
OBJECTIVE:
Assess whether the use of a visual mapping software program to manage activities of daily living would have a positive impact on QOL scores and on cognitive scores in a group of dementia residents in an adult living community.
METHODS:
We compared quality-of-life scores and cognitive function scores before and after using the assistive technology for three months.
RESULTS:
1. QOL scores significantly improved in the memory impaired residents, as measured by a self-report questionnaire. 2. Caregivers also reported significantly improved QOL scores in the residents, and the caregivers reported more improved scores than the residents did. 3. Net Promoter Scores for residents and caregivers showed that using visual maps was highly satisfying; they would continue using this technology. 4. Memory-impaired residents showed significantly improved scores in cognitive areas reflecting improved ability to focus and pay attention.
CONCLUSIONS:
In addition to the positive findings in QOL and cognition, assistive technologies applied to dementia care are easy to access, easy to use, have little risk of side effects, and are relatively low in cost.
Introduction
Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) are age-associated neurodegenerative diseases that are reaching epidemic proportions as a result of an aging world population. Progression of AD includes losses in memory, orientation, independent decision-making capacity, and abilities for self-care. Impressive gains in our understanding of AD pathogenesis have not yet translated into pharmacological therapies that halt disease progression. Evidence-based behavioral approaches are rapidly becoming recognized as methods to provide effective neurocognitive and therapeutic support for AD/ADRD individuals and their caregivers [1]. Behavioral approaches include lifestyle modifications, reducing physical and psychological barriers for completing activities of daily living (ADLs), and improving communication with and amongst caregivers.
There is growing evidence that assistive digital technology, when combined with behavioral approaches, can be useful interventions that help individuals with various forms of cognitive impairment, including dementia [2, 3, 4, 5]. An example of assistive technology is the development of mind mapping software programs for creating a visual map of instructions or procedures. In its simplest form, a visual map is a series of connected pictures illustrating the sequential steps for undertaking and successfully completing an activity of daily living (ADL) like bathing, dressing, or brushing teeth. Visual mapping software is already successfully applied to a wide range of areas in education, management, and medicine. This includes pre-operative instructions for patients, discharge instructions for patients, and assistive medication labels [6, 7]. The use of visual mapping is also reported to improve caregiver teamwork in the care of individuals with dementia [8]. A landmark book by Dr. George Huba, a psychologist diagnosed over 7 years ago with fronto-temporal dementia (FTD), describes his use of visual mapping to successfully organize, schedule, and accomplish his daily goals and ADLs [9]. Inherent advantages of assistive technologies such as software for visual mapping are ease of distribution and high accessibility, little to no side effect profile, and low cost.
For the feasibility study described here we assessed the effectiveness of visual mapping as an assistive technology for memory-impaired individuals. The innovative idea of using visual mapping to assist memory-impaired individuals is based on two relatively recent neuroscience systems-level findings: First, certain brain regions (e.g., the neostratum) are less likely to be affected by the neuropathology (e.g., plaques and tangles) that characterize the early stages of AD [13]. Second, the neostriatum and related spared brain regions are involved in the development of non-conscious procedures, skills and habits [14] that underlie routine behaviors associated with many ADLs. We asked four addressable questions: 1. Can the use of visual maps enhance quality of life (QoL) of memory impaired individuals? 2. Do caregivers perceive positive QoL changes in individuals under their care as a result of the use of visual maps? 3. Was the experience using visual maps satisfying to the extent that individuals with impaired memory and their caregivers would continue to use this assistive technology and would recommend the use of visual maps to others? 4. Can the use of visual maps enhance cognitive function in memory-impaired individuals?
Methods
We combined a visual mapping software program with a series of visual map templates and loaded the software and the templates on mobile tablet devices to create the assistive technology used here. The visual maps consisted of pictures and keywords presented in a step-by-step sequence to assist memory-impaired patients and caregivers in organizing and successfully accomplishing their activities of daily living (Fig. 1). The study was conducted at an Atlanta-based adult living community with a resident population of approximately 80 individuals. A professional staff of trained and certified supervisors and caregivers oversee a range of care plans at the adult living community that include independent living, managed care, and dementia care.
Participants
The adult living community staff selected a group of ten memory-impaired individuals. Inclusion criteria were full-time residency, medical record diagnosis of mild cognitive impairment (MCI), Alzheimer’s disease (AD), or Alzheimer’s disease related dementia (ADRD), ability to comprehend and carry on general conversation, and ability to carry out one-step commands. Exclusion criteria were history of chronic drug or alcohol abuse, a diagnosis of schizophrenia, or evidence of severely impaired vision. Three resident participants did not complete the study (two individuals died, and one left the study due to family conflicts). Table 1 shows the demographic data for the seven individuals (mean age
Resident participant demographics
Resident participant demographics
An example of a visual map for the Drinking Water activity of daily living (ADL), showing two sequential steps. Each step appears individually and sequentially on the tablet screen, controlled by the user’s touch screen. When an ADL is completed, the home screen appears showing the next scheduled ADL.
This small-n feasibility study used a longitudinal, non-randomized, single-arm, repeated measures design where pre- and post-intervention measures were obtained. In the pre-intervention baseline condition, assessments of residents were done prior to the use of visual maps. In the post-intervention condition re-assessments of residents were done immediately after three months of using visual maps. Additionally, post-intervention data were collected both from residents and caregivers using an 18-question Exit Interview and a 2-question Net Promoter Index (NPI) score. The residents served as their own controls (single arm, repeated measures).
Pre-intervention baseline condition (
1 week duration)
Caregivers: The two supervisor/caregivers were provided smart tablet devices dedicated for use in this study and preloaded with visual mapping software and a customized template library of ADL visual maps. Caregivers were trained by technical staff on the use of the visual mapping software, including how to access a library of 40 map templates that depicted a wide range of activities of daily living (ADLs). Caregivers were also trained on how to modify and personalize the template maps by replacing generic photos with photos of the actual room or items of the resident for whom the maps were created (Fig. 1). The built-in smart device camera was used for this process so that new photos could easily be imported into a map. Residents: Clinically trained staff personnel conducted the pre-study assessment of all ten residents using five standardized neuropsychological assessments. Residents were administered the assessments in the same order: 1. Generalized Anxiety Disorder (GAD7 – seven items assessed severity of anxiety disorder). 2. Personal Health Questionnaire (PHQ8 – eight items assessed energy, appetite, nervousness, depression). 3. Quality of Sleep/Pain (QSP5 – five items assessed quality of sleep, discomfort from pain). 4. Quality of Life (GQL8 – eight items selected from the Wisconsin University Quality of Life Questionnaire assessed enjoyment, leisure, mood). 5. Repeatable Battery for Assessment of Neuropsychological Status (RBANS; Form A). For the four questionnaires, all items were in the form of statements to be answered on a 0–3 scale (e.g., “Over the last two weeks how often have you been bothered by feeling nervous, anxious or on edge?” 0. Not at all, 1. Several days, 2. Over half the days, 3. Nearly every day). Residents were administered the tests orally (the staff person stated the question and the multiple-choice answers, then recorded and confirmed with residents their choices on the questionnaire sheet. To allow completion of the full battery within a one-hour session, abbreviated versions were used for some of the standardized assessments (indicated above in parentheses). The RBANS was administered in its complete form, and it was administered interactively, directed by the RBANS manual.
Intervention with visual maps (
3 months duration)
During this period, caregivers worked with residents on a variety of ADLs, using the maps developed for helping them routinely accomplish their activities more effectively. Caregivers maintained their regular daily contact with residents, and they were available for assistance in creating or modifying the visual maps. Additionally, technical staff held weekly office hours on site, and they were available to residents and caregivers to “troubleshoot” any smart device malfunctions or other technical problems throughout the three-month study period.
Post-intervention condition
At the end of three months of using visual maps, residents were re-assessed using the same battery administered in the Pre-Intervention condition (the RBANS Form B was used for the retest). The same staff person carried out the pre and post assessments. Two additional assessments were administered at the end of the three months, both to the residents and to their caregivers: 1. An 18-item overall-quality-of-life questionnaire (QoL18) assessed whether change (positive or negative) occurred as a result of using the MHS for three months. The questionnaire was administered orally to the residents in a Likert scale, self-rating format (5. Much better, 4. Better, 3. Not much change, 2. Worse, 1. Much worse). The caregivers completed multiple QOL18 questionnaires, each with respect to a particular resident under their care. 2. A 2-item “Yes”/“No” Net Promoter Score (NPS) assessed residents’ and caregivers’ overall user-experience 1. Would you recommend this assistive technology to your friends/colleagues? 2. If there was a follow-up study using this assistive technology, would you participate?
Results
As shown in Table 2, there were no significant differences between the residents’ mean pre/post scores on three of the neuropsychological assessments (GAD7, PHQ8, and QSQ5; all p values
The RBANS test generates 5 Subtest Scale Scores plus a Total Scale Score (Table 2). The seven residents showed an average increase of 10 Total Scale Score points between their pre (mean
Pre- and post-intervention assessment scores (0/0) for the neuropsychological test battery
Pre- and post-intervention assessment scores (0/0) for the neuropsychological test battery
Footnotes
Acknowledgments
All authors have made equally significant contributions to this manuscript and are listed alphabetically by last name. We thank the residents, supervisors, caregivers and management, at Holbrook Life Management, LLC for their generous and meaningful time and effort, without which this study would not have been possible. The Georgia Research Alliance’s Venture Development Program provided competitive-reviewed research funding that supported the work described here.
Conflict of interest
None to report.