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      Latino/Hispanic Alzheimer’s caregivers experiencing dementia-related dressing issues: corroboration of the Preservation of Self model and reactions to a “smart dresser” computer-based dressing aid

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          Abstract

          Objective

          To gain an understanding of Latino/Hispanic caregivers’ dementia-related dressing issues, their impressions of using a “smart” context-aware dresser to coach dressing, and recommendations to improve its acceptability.

          Method

          The same Latina moderator conducted all the caregiver focus groups. She followed a semi-structured interview guide that was previously used with White and African American family caregivers who experienced Alzheimer’s disease related dressing challenges. From that study, the Preservation of Self model emerged. Using a deductive qualitative analytic approach, we applied the thematic domains from the Preservation of Self model to ascertain relevance to Latino/Hispanic caregivers.

          Results

          Twenty Latino/Hispanic experienced caregivers were recruited, enrolled, and participated in one of three focus groups. The majority were female (75%) and either the spouse (25%) or adult child (35%). Striking similarities occurred with the dressing challenges and alignment with the Preservation of Self model. Ethnic differences arose in concerns over assimilation weakening the Latino culture of family caregiving. Regional clothing preferences were noted. Technology improvement recommendations for our system, called DRESS, included developing bilingual prompting dialogs and video modules using the local vernacular to improve cultural sensitivity. Caregivers identified the potential for the technology to enable user privacy, empowerment, and exercise as well as offering respite time for themselves.

          Conclusion

          Findings suggest dementia-related dressing issues were shared in common by different racial/ethnic groups but the response to them was influenced by cultural dynamics. For the first time Latino/Hispanic voices are heard to reflect their positive technology impressions, concerns, and recommendations in order to begin to address the cultural digital disparities divide.

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          Most cited references19

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          2015 Alzheimer's disease facts and figures.

          (2015)
          This report discusses the public health impact of Alzheimer’s disease (AD), including incidence and prevalence, mortality rates, costs of care and the overall effect on caregivers and society. It also examines the challenges encountered by health care providers when disclosing an AD diagnosis to patients and caregivers. An estimated 5.3 million Americans have AD; 5.1 million are age 65 years, and approximately 200,000 are age <65 years and have younger onset AD. By mid-century, the number of people living with AD in the United States is projected to grow by nearly 10 million, fueled in large part by the aging baby boom generation. Today, someone in the country develops AD every 67 seconds. By 2050, one new case of AD is expected to develop every 33 seconds, resulting in nearly 1 million new cases per year, and the estimated prevalence is expected to range from 11 million to 16 million. In 2013, official death certificates recorded 84,767 deaths from AD, making AD the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age 65 years. Between 2000 and 2013, deaths resulting from heart disease, stroke and prostate cancer decreased 14%, 23% and 11%, respectively, whereas deaths from AD increased 71%. The actual number of deaths to which AD contributes (or deaths with AD) is likely much larger than the number of deaths from AD recorded on death certificates. In 2015, an estimated 700,000 Americans age 65 years will die with AD, and many of them will die from complications caused by AD. In 2014, more than 15 million family members and other unpaid caregivers provided an estimated 17.9 billion hours of care to people with AD and other dementias, a contribution valued at more than $217 billion. Average per-person Medicare payments for services to beneficiaries age 65 years with AD and other dementias are more than two and a half times as great as payments for all beneficiaries without these conditions, and Medicaid payments are 19 times as great. Total payments in 2015 for health care, long-term care and hospice services for people age 65 years with dementia are expected to be $226 billion. Among people with a diagnosis of AD or another dementia, fewer than half report having been told of the diagnosis by their health care provider. Though the benefits of a prompt, clear and accurate disclosure of an AD diagnosis are recognized by the medical profession, improvements to the disclosure process are needed. These improvements may require stronger support systems for health care providers and their patients.
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            Understanding and Validity in Qualitative Research

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              Recognising deductive processes in qualitative research

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                Author and article information

                Journal
                Digit Health
                Digit Health
                DHJ
                spdhj
                Digital health
                SAGE Publications (Sage UK: London, England )
                2055-2076
                21 November 2016
                Jan-Dec 2016
                : 2
                : 2055207616677129
                Affiliations
                [1 ]School of Nursing, MGH Institute of Health Professions, Boston, MA, USA
                [2 ]College of Nursing & Health Innovation, Arizona State University, Phoenix, AZ, USA
                [3 ]School of Computing, Informatics and Decision Systems Engineering, Arizona State University, Tempe, AZ, USA
                Author notes
                [*]Diane Feeney Mahoney, School of Nursing, MGH Institute of Health Professions, 36 First Avenue, Boston, MA 02129-4557, USA. Email: dmahoney@ 123456mghihp.edu
                Article
                10.1177_2055207616677129
                10.1177/2055207616677129
                6001274
                27928511
                0e55b4c0-6ac4-40a4-8566-7097120f5f33
                © The Author(s) 2016

                This article is distributed under the terms of the Creative Commons Attribution 3.0 License ( http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 7 May 2016
                : 23 September 2016
                Categories
                Original Research
                Custom metadata
                January-December 2016

                dressing,latino or hispanic caregiver,context-aware computing,qualitative research,gerontechnology,smart home,assistive technology,dementia,alzheimer’s disease,cross-cultural study

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