The Future of Dementia Care: The Digital Alzheimercenter
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Abstract
The Future of Dementia Care: The Digital Alzheimercenter
BJJ Hattink, SAM Sikkes, E Oostra, Ph Scheltens, RM Dröes, AW Lemstra
Background
Alzheimer’s disease (AD) is a progressive, neurodegenerative disease, characterized by gradually worsening memory impairment, often accompanied by changes in behavior. Since the main risk factor for AD is age the number of patients with AD will increase substantially with the raised life expectancy. Additionally, the number of people available to care for these patients will steadily decrease. This calls for innovative and efficient solutions for dementia care.
Objective
The Alzheimercenter of the VU University Medical Center developed a unique online patient portal, the Digital Alzheimercenter (DAC). This portal, designed in close cooperation with end-users, provides comprehensive and reliable information on dementia and coping, a peer-to-peer community and services to enhance communication between healthcare professionals and patients. The DAC was launched in January 2012 and has issued over 1000 accounts since. In the current study, we aim to evaluate usability and added value of the DAC.
Methods
This study was performed using mixed methods: 1) an online survey among all currently registered accounts (n=917) on usability and future development. 2)observations in a selection of users of performance on specific tasks focusing on speed, number and type of mistakes and way of navigating. 3) semi-structured interviews from patients with dementia, caregivers and professionals with in-depth questions about use and value of the portal.
Results
The online survey was taken by 335 participants (36,5%). Fifty-one percent indicated they actively used the portal. The majority found the portal easy to manage (82% of patients and 90% of caregivers) and useful (66% of patients and 78% of caregivers). The DAC was also considered helpful for understanding dementia (62% in both patients and caregivers). The most valued functionalities were general information on dementia; overview of upcoming appointments and information about the Alzheimercenter. Six participants (3 patients with mild dementia, 3 informal caregivers) were observed at home while using the DAC. Most errors were made in basic internet-skills in both groups (eg. links & browsers). Time for completing the tasks ranged from 24 to 51 minutes in patients and 9 to 40,5 minutes in caregivers. Semi-structured interviews were taken from 7 informal caregivers, 7 patients and 7 professionals. Integrated results from all analyses will be presented at the conference.
Conclusions
Currently, very little research has been done on use of internet and portal-websites in dementia care. This study shows that both patients and caregivers are willing and able to use specifically designed portals, and find them useful and easy to manage. In the future, patient-portals may prove to be an effective and efficient way to deliver care.
BJJ Hattink, SAM Sikkes, E Oostra, Ph Scheltens, RM Dröes, AW Lemstra
Background
Alzheimer’s disease (AD) is a progressive, neurodegenerative disease, characterized by gradually worsening memory impairment, often accompanied by changes in behavior. Since the main risk factor for AD is age the number of patients with AD will increase substantially with the raised life expectancy. Additionally, the number of people available to care for these patients will steadily decrease. This calls for innovative and efficient solutions for dementia care.
Objective
The Alzheimercenter of the VU University Medical Center developed a unique online patient portal, the Digital Alzheimercenter (DAC). This portal, designed in close cooperation with end-users, provides comprehensive and reliable information on dementia and coping, a peer-to-peer community and services to enhance communication between healthcare professionals and patients. The DAC was launched in January 2012 and has issued over 1000 accounts since. In the current study, we aim to evaluate usability and added value of the DAC.
Methods
This study was performed using mixed methods: 1) an online survey among all currently registered accounts (n=917) on usability and future development. 2)observations in a selection of users of performance on specific tasks focusing on speed, number and type of mistakes and way of navigating. 3) semi-structured interviews from patients with dementia, caregivers and professionals with in-depth questions about use and value of the portal.
Results
The online survey was taken by 335 participants (36,5%). Fifty-one percent indicated they actively used the portal. The majority found the portal easy to manage (82% of patients and 90% of caregivers) and useful (66% of patients and 78% of caregivers). The DAC was also considered helpful for understanding dementia (62% in both patients and caregivers). The most valued functionalities were general information on dementia; overview of upcoming appointments and information about the Alzheimercenter. Six participants (3 patients with mild dementia, 3 informal caregivers) were observed at home while using the DAC. Most errors were made in basic internet-skills in both groups (eg. links & browsers). Time for completing the tasks ranged from 24 to 51 minutes in patients and 9 to 40,5 minutes in caregivers. Semi-structured interviews were taken from 7 informal caregivers, 7 patients and 7 professionals. Integrated results from all analyses will be presented at the conference.
Conclusions
Currently, very little research has been done on use of internet and portal-websites in dementia care. This study shows that both patients and caregivers are willing and able to use specifically designed portals, and find them useful and easy to manage. In the future, patient-portals may prove to be an effective and efficient way to deliver care.
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