Reduced care burden and improved quality of life in African American family caregivers: Positive impact of personalized assistive technology

Abstract

BACKGROUND:

African Americans living with dementia are considered less likely to seek formal institutionalized elder care and more likely to be managed in the home by family-member caregivers. Assistive technologies (the use of smart visual devices like tablets and phones) can be used effectively to guide memory-impaired individuals with a sequence of pictures showing steps to complete activities of daily living, e.g., bathing, toileting, dressing. Assistive technology so far has not been generally embraced in African American communities.

OBJECTIVES:

Determine, if African American family caregivers, given the opportunity, would embrace the use of assistive technology and if they would perceive its use beneficial.

METHODS:

We assessed a group of eight family caregivers’ overall care-burden scores, and their user-satisfaction scores after using assistive technology for three months.

RESULTS:

We found significant reduction in caregiver burden, positive changes in behavior and emotion scores, and high ratings on user satisfaction.

CONCLUSIONS:

The findings reported here comprise the first systematic study of the use of assistive technology by caregivers in an underserved population. They set the stage for exploring meaningful strategies and variables that will better engage underserved populations to take advantage of assistive technologies available in healthcare.

Keywords

Caregiving African Americans dementia assistive technology quality of life activities of daily living

1. Introduction

African Americans are twice as likely to develop Alzheimer’s and related diseases as European Americans. As a group, African Americans have disproportionately more socioeconomic, medical and caregiving challenges associated with dementia [1]. Caregiving for African American persons living with dementia is more likely to be managed in the home with family members vs. a long-term care institution [2]. However, two in five caregivers (41%) who provide unpaid care to an African Americans say that race makes it harder for them to get excellent health care [3, 4]. In addition to increased financial strain hardship, being a familial caregiver increases the risk of psychological morbidity including social isolation, reduced quality of life, increased frustration, and depression [5].

Findings from studies focusing on cultural differences for providing eldercare have shown that Black American caregivers are more likely to agree that older dependent adults within the family should be cared for by familial caregivers compared to White caregivers [3]. Reasons for these differences in value and behavior include an understanding that African Americans are more likely to prefer collectivist than individualistic caregiving due to interdependence and expected reciprocity (e.g., family-member caregivers rather than professional caregivers); there are more barriers to receiving formal care through the healthcare system; and there is more mistrust of formal institutionalized eldercare due to systemic racism [3, 6, 7].

Family caregiving is generally begun with little understanding of the tasks and skills required, resulting in much emotional distress both for the individual living with dementia and for their caregivers. We have previously demonstrated that the stressors and burdens of caregiving, for African Americans, is lessened with culturally appropriate formal training [2]. Individuals living with memory impairment, as well as their caregivers, often report diminished quality of life due to an inability to independently perform activities of daily living (ADL’s) such as bathing, toileting, and dressing.

Recently, the use of assistive technology, for example the use of a smart device (e.g., tablet or phone), to present visual maps that show the steps needed to successfully complete an ADL have been shown to significantly enhance the ability to complete ADL’s in individuals living with dementia and memory-impairment [8]. For a particular ADL, individuals are both guided through the right sequence of steps and are reminded each time of the sequence and behavioral actions to complete the ADL. This daily repetition of the use of the visual maps over time gradually leads to improved and sustained behavior, e.g., dressing more quickly, in the right sequence, resulting in more accurate and independent completion of the ADL. In a recently submitted preliminary report [4], we described the positive impact of an assistive technology program on quality of life and ability to complete ADLs in participants from two outpatient clinical programs, one of which included a cohort of eight elderly African Americans living at home with dementia. We showed that elderly African Americans living at home with dementia significantly benefitted from the use of assistive technologies. While each of these individuals had a family caregiver who used the assistive technology together with them, the focus of the report was on outcomes related to the clinical program care-recipients. No findings related to the eight African American caregivers were reported.

2. Objective

Here we follow up with what we believe is the first systematic report of the use of assistive technology in a group of African American family caregivers. We asked three straightforward and foundational questions with respect to the use of assistive technology.

1.
Will African American family caregivers embrace the use of assistive technology?
2.
Will the use of assistive technology impact the quality of life and care burden of African American family caregivers in positive ways?
3.
Based on their experience in this study, would African American family caregivers continue to use assistive technology, if they had the opportunity?

We also include new key comparisons between the eight African American caregivers and their care-recipients, e.g., caregiver ratings of the impact of assistive technology on their care-recipient’s quality of life versus the care-recipients self-ratings of their quality of life. Additionally, we provide an interesting case-study example of how the use of assistive technology by caregivers could meaningfully signal changes in the behavior of care-recipients that might otherwise go unrecognized by the care-recipients themselves. We also provide voluntarily-offered quotes from caregivers to make the point that small, statistically significant changes in scores nevertheless translate to remarkably powerful real-life experiences.
3. Methods

3.1 Participants

Participants for the study were recruited from an academic health system clinic outpatient program focused on serving the needs of older African Americans living with cognitive impairment and dwelling in their homes. The protocol for the clinical cohort was approved by the Emory University Institutional Review Board and all participants were provided written informed consent. The experimental design and the participant protocol included recruitment of eight dyads, each dyad comprising a carerecipient living with a diagnosis of dementia and their family caregiver. Table 1 shows demographic characteristics of the caregivers, and the care-recipients. The care-recipients average cognitive scores derived from administration of a standardized cognitive test (Repeatable Battery for the Assessment of Neuropsychological Status (RBANS: Form A) are also shown and as reported, were comparable to other cohorts characterized as individuals with ‘impaired’ to ‘significantly impaired’ cognitive function [9].

Table 1
Demographics of the participants and baseline cognitive scores of the caregiver-recipients

	Caregiver-recipients	Caregivers
Age, Mean (SD)	78 (10.3)	65 (9.2)
Female	3	6
Male	5	2
Single	0	3
Married	5	5
Widowed	3	0
Baseline RBANS scores, Mean, (SD)
Immediate memory	56.75 (20.55)	–
Visuospatial	70.12 (19.39)	–
Language	71.00 (21.90)	–
Attention	69.62 (10.32)	–
Delayed memory	52.12 (20.40)	–
Total scale score	58.00 (15.57)	–

Note. RBANS: Repeatable Battery for the Assessment of Neuropsychological Status.

3.2 Intervention

Intervention involved a 3-month trial using assistive technology. A visual mapping software program was used to generate a series of visual map templates. The software and visual maps were accessed through a mobile tablet device provided to the participants, including device-training and procedures described previously [8]. Visual maps consisted of pictures and keywords in a step-by-step sequence to guide and assist participants living with memory impairment in organizing and successfully accomplishing ADLs. During an initial interview, caregivers were encouraged to select visual maps based upon care-recipient areas of need. The technology allowed caregivers to add images from their own environment to personalize the selected templates, thereby providing additional cues useful for memory and habit for their caregiver-recipients. Visual maps involving ADL performance that were most commonly selected, involved bathing, brushing teeth, and dressing. The caregiver of each dyad was provided a smart device to access and display the MapHabit system visual maps with their care-recipient.

3.3 Measures

A 19-item Exit Questionnaire [8] assessed whether change (positive or negative) occurred across a wide range of behavioral measures (e.g., time to complete ADLs, depression, coping ability, enjoyment of life) as a result of using the visual maps for three months. At the end of the three-month study, the questionnaire was administered orally to caregivers and to care-recipients (caregivers assessed their care-recipient) by outpatient staff using a Likert scale format, where a high score was better (5. Much better, 4. Better, 3. Not much change, 2. Worse, or 1. Much worse). The Zarit Caregiver Burden Interview (12-items) [11] was self-administered using a Likert scale self-rating format, where a low score was better (0. Never, 1. Rarely, 2. Sometimes, 3. Quite frequently, 4. Nearly always) at the start of the study and again at the end of the 3-month duration of the study. In addition to the overall score (12 questions), we grouped related questions into three categories: negative feelings (e.g., “Do you feel angry when you are around your relative?” – 5q), loss of control (e.g., “Do you feel you have lost control of life since your relative’s illness?” – 4q), and time for myself (“Do you wish you could just leave the care of your relative to someone else?” – 3q). Assignment of questions to categories was done prior to any data observation or statistical analysis, and no question was assigned to more than one category. At the end of the study, all caregivers were administered a 2-item “Yes”/“No” net-promoter type questionnaire that assessed participants’ overall user-experience. (“Would you recommend this visual map system to you friends and relatives?”, and “Would you participate in another study using this system?”). Additionally, caregivers were given the opportunity to provide open-ended feedback either orally or in written form after a study debriefing.

3.4 Statistical analyses

Baseline characteristics for the caregivers and care-recipients were analyzed using descriptive statistics. Exit Interview responses for both groups were analyzed using a 1-sample $t$ -test to assess for differences from an expected mean score of 3, ‘not much change’. On the 1–5 Likert scale Caregiver Burden Interview responses were assessed separately for the pre and post conditions using the mid-score of 2, ‘sometimes’, on the 0–4 Likert scale. Caregiver Burden Interview pre-post responses were compared using a matched-pairs $t$ -test. Where appropriate, within-group comparisons were also carried out using correlational analyses. Analyses were conducted using the A&X Analytics Data Explorer statistical package, version 1.34.1.2.

4. Results

On the Quality of Life Exit Interview, the eight memory-impaired care-recipients rated themselves on average as having experienced positive change during the 3-month study. They reported ratings consistently above the null hypothesis score of 3, with scores ranging from 3.2 to 4.3 (Fig. 1; mean $=$ 3.6, ${p}<$ 0.01).

Figure 1.

Light grey bars: Exit Interview scores for all eight caregivers and their care-recipients (light grey bars). Bracketed lines show the range of individual scores. With the exception of the scores reported by Caregiver #1, all caregivers and caregiver recipients reported significant increases in quality of life scores. Dark grey bars: Exit Interview scores for Caregiver #1, and Caregiver #1’s care-recipient. See Results section for details. Numbers above the bars show the actual scores.

Overall, the eight caregivers also rated the individuals in their care as significantly improved across the three months duration of the study. The scores for the caregivers ranged from 2.5 to 4.5 (Fig. 1; mean score $=$ 3.6, ${p}=$ 0.03). There was no significant group difference between the scores of the caregivers and the scores of the care-recipients on the Exit Interview ( ${p}>$ 0.10).

An Exit Interview correlational analysis comparing the self-rating scores of the eight care recipients with the scores given them by their eight respective caregivers revealed only a weak positive correlation coefficient of 0.15, ${p}>$ 0.50.

On the 12-item Caregiver Burden Interview, data from only seven caregivers were analyzed. One caregiver was unable to complete the Caregiver Burden questionnaire administered at the end of the study for reasons unrelated to the study. The mean difference between the pre scores obtained at the baseline interview, and post scores obtained from the seven caregivers after using visual maps for three months, did not reach significance ( ${p}>$ 0.10). Additional analyses revealed that after three months of using the visual maps, six of the seven caregivers all reported on average, a decrease of 0.63 Burden Interview scale points (lower scores correspond to lower burden). By contrast, the remaining caregiver (Caregiver #1) reported an increase of 1.5 scale points. Confidential discussion with the outpatient clinical staff provided a possible explanation: During the course of the study, Caregiver #1’s care-recipient’s diagnosis had been changed from AD to a new diagnosis of fronto-temporal dementia (FTD), consistent with reported fast-developing negative changes in the care-recipient’s behaviors. These changes were presumably reflected in Caregiver #1’s increased Burden score. Reanalysis of the Caregiver Burden Interview data, using six caregivers (not including Caregiver #1’s scores), revealed that following three months of using the MapHabit system, caregiver Burden scores were significantly improved compared to baseline scores (mean pre-score $=$ 2.1, mean post-score $=$ 1.5, ${p}<$ 0.05), a lower score reflecting lower burden. Pre/post scores for Caregiver #1 are shown separately (Fig. 2).

Figure 2.

Pre (baseline) scores (blue) and post (after three months of using assistive technology visual maps) scores (yellow) on the Caregiver Burden Interview. Left blue and yellow bars: Caregiver burden scores declined significantly (lower score $=$ less burden) for six caregivers (one caregiver was unable to complete the CBI, unrelated to the study). Right blue and yellow bars: Caregiver #1 reported pre-post scores in the opposite pattern of the six other caregivers: a significantly increased burden post score, consistent with Caregiver #1’s caregiver-recipient’s significantly increased negative behaviors during the period of the study. See Results section for details. Numbers above the bars show the actual scores.

On the grouped Burden questions, pre-post analyses were carried out with data from the six caregivers. Caregivers showed significantly reduced Burden scores for the categories of negative feelings ( ${p}<$ 0.05), and loss of control ( $p<$ 0.001), but not for the category time for self ( $p>$ 0.10). For Caregiver #1, the categories of loss of control and time for self showed significantly increased scores ( ${p}s<$ 0.05) but not for negative feelings ( ${p}>$ 0.5).

For the net-promoter type questions, every caregiver answered “Yes” to both questions, with the exception of Caregiver #1 who said “Yes” to recommending it to friends and family, but said “No” to participating in another study. One caregiver was unable to respond to the net-promoter questions, for reasons unrelated to the study.

5. Discussion

The findings from the present study indicate that the use of assistive technology, specifically, a visual mapping program to assist with ADLs is feasible for use by African American caregivers caring for their family individuals living with dementia.

1. Will African American caregivers embrace the use of assistive technology? At the end of the three-month study, all caregivers were still fully engaged, and had completed the study. Nearly every caregiver indicated they would recommend it, and they would again engage with assistive technology if the opportunity arose in the future. The findings reported here for African American users, are consistent with previous reports [8, 10]. Moreover, the caregivers in the present study reported significant positive changes in important areas of feelings and perceptions with regard to their caregiver stress and burden.

A comparison of caregivers’ and their care-recipients’ Exit Interview scores make two salient points about how African Americans embraced the use of assistive technology. First, both groups reported about the same overall scores. One possibility to explain the similar outcomes is to suppose that the scores are simply reflecting ceiling or floor effects. However, the Likert scale provides sufficient parametric space to report much higher or much lower scores. The fact that, on average, that did not occur, suggests another interpretation, that the observed scores were being reasonably, realistically reported. Supporting this view is the clear difference in scores between Caregiver #1 and his/her care-recipient (Fig. 1). Second, although the mean scores reported by the six caregivers were similar overall to those of their care-recipients, there was only a weak, non-significant correlation. This was true whether or not Caregiver #1 and his/her care-recipient were included in the correlational analyses ( ${p}s>$ 0.72). This finding suggests that when it came to specific quality of life questions, perceptions of African American caregivers and care-recipients did not match very well. Supporting this view is the greater range of scores reported by the caregivers (Fig. 1). These findings, taken together, underscore the view that the African American cohort described here did embrace the use of assistive technology and likely based their questionnaire responses on the positive and negative experiences they had during the three-month study.

2. Can the use of assistive technology reduce stress and care burden in African American family caregivers? After three months of using the visual map assistive technology, six of the seven caregivers reported, on average, a decrease of 0.63 scale points between their baseline scores and their post-study scores on the Burden Interview (lower scores correspond to lower burden). While this reduction in Burden score appears small, this finding makes three important points. First, it was a significant statistical finding (actual ${p}=$ 0.03) in a relatively compact parametric space. Second, as with the Exit Interview data, there were no floor or ceiling effects in the distributions of the pre-post scores, although there was sufficient parametric space to choose higher or lower scores. Thus, a pre-post difference of two-thirds of a point on this Likert scale represents a meaningful change. Third, while some caregivers in the study focused on just one visual map to help accomplish an ADL important for their dyad, others used several maps, but no matter the level of use, all succeeded in reducing their care burden scores on the Burden Interview. Moreover, all their care-recipients reported enhanced independence and quality of life, positive changes that presumably also contributed to reduced stress and burden for the caregivers.

Personal testimonies from participants (provided voluntarily) capture some of the flavor of how their experiences using the visual maps assistive technology, during the three-month study changed their lives in positive ways. [1003b]: “I’ve been able to use the visual [map] resources so that I can better care for my Mom and keep her in place at home. It helps me to key in on things that are the most necessary, the most needful things. We have several routines that we do during the day and this helps me to see what things are most important.” [1004b]: “It’s helping me to be able to sleep at night. It’s easy to learn. If you stick with it and develop a routine, you will see progress.” [1005b]: “… actually watching my husband respond to each [picture] and seeing improvement especially to the bathing. It was awesome because he actually went to take his bath. It was great! Once he gets in the bath and gets done, we’re ready for the world.” These direct quotes make an additional important point: A relatively small, statistically significant change in score, can represent and translate to a very large and important change in behavior and daily life. Accordingly, we believe that the change score of 0.63 is meaningful and important to consider as evidence of the effectiveness of the use of assistive technology in this environment, and the impact that assistive technology can have on quality of life.

3. Based on their experience in this study, would African American family caregivers continue to use assistive technology if they had the opportunity? Almost every participant, both caregivers and caregiver-recipients, responded positively to the three-month study and the use of the MapHabit assistive technology system. Nearly all the participants indicated they would continue to use the visual maps if they were available and would take part in another study. As in the previous discussion, the statistics alone don’t sufficiently communicate the depth of the impact on the caregivers’ lives, nor the extent to which they did embrace the three-month experience. [1004b]: “… I wouldn’t have the peace of mind that I have now caring for Mom without this program.” In important ways, this study has set the stage for potential new opportunities to engage the African American community (as well as other underrepresented populations) in research, possibly more than has been the opportunity in the past.

6. Conclusions

While it has been previously speculated that use of technology might not be widely accepted by older African American adults, the present results with African American family caregivers, as well as their African American care-recipients living with dementia suggest otherwise. In recent years, technology adoption is progressively being embraced both among aging care recipients and their family caregivers [7, 10]. The present findings represent one of the first systematic studies to show that the use of assistive technology can be effectively introduced and used in an underrepresented community. Future studies will need to focus on exploring the best strategies for developing assistive technologies tuned to cultural needs and differences. For example, an additional point discovered in the present study is that personalization, in which users engage in the selection of activities to be focused upon, can be a facilitator in technology use among diverse populations of older adults. Thus, an important consideration in recruiting individuals into research trials may be to include aspects of meaningful autonomy.

Footnotes

Acknowledgments

We thank the caregivers and the care-recipients in the Atlanta African American communities for their generous and meaningful, and very personal involvement in this study. The Georgia Research Alliance’s Venture Development Program provided competitive-reviewed research funding that supported the work described here. Related findings from the eight care-recipients in the present study appear in another publication currently in press []. However, the analyses and findings presented here were not part of that report.

Conflict of interest

None to report.

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