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Technologies play a growing role in helping adults with dementia but must be developed in an ethical and equitable way
In the near future, the United States is anticipating a dramatic increase in the number of older adults living with Alzheimer’s disease and other forms of dementia. These conditions adversely affect patient health and well-being and will place further stress on professional and family caregivers. Intelligent assistive technology (IAT) driven by expansions in communications, sensors and voice recognition technologies promise to ease these burdens while improving quality of life for older adults living with dementia. IAT could lead to better care for this vulnerable population while allowing people with dementia to safely age in place in their own homes. However, the explosive growth of IAT raises several concerns regarding ethics and values as well as accessibility and equity.
In a new study published in the journal Frontiers, Deborah Vollmer Dahlke, DrPH, Texas A&M School of Public Health Alumni Board member, and Regents and Distinguished Professor Marcia Ory, PhD, at the School of Public Health, investigated these concerns. Using a brief review of existing literature, the researchers looked into issues related to the design, development and use of IAT with respect to the growing population of older adults living with dementia. In their review, Vollmer Dahlke and Ory found many common elements that they grouped into three categories. These included challenges in providing IAT access and equity, concerns about including people with dementia and their caregivers in designing and developing IAT, and questions about the ethical and social values involved in developing IAT for people with dementia.
“Although there is tremendous potential for IAT to help people living with dementia, many people lack access and underlying health disparities are compounded,” said Ory, who is the founding director of the Texas A&M Center for Population Health and Aging.
Research shows that socioeconomic status and geography are two major factors that can result in low levels of access, with various cultural and technology literacy aspects also playing a role. IAT relies on either standalone devices or applications on mobile devices like smartphones and tablets. Studies have shown that smartphone ownership is correlated with socioeconomic status, and the ability to afford other IAT devices similarly depends on income. Additionally, IAT normally requires broadband internet, access to which can be limited by income as well as geography. More than 20 million Americans, mostly in rural locations, live in areas where broadband is simply unavailable. The researchers note that continued decreases in the costs of smartphones and other devices and efforts to expand broadband into areas without access could increase equitable access to IAT, though more work is needed.
Another issue related to developing IAT for dementia patients is the challenge of including people living with dementia in the IAT design process. User-centered design has been identified as crucial, but cognitive impairments can make it difficult for patients to express their wants and needs. This is especially true as dementia progresses. Additionally, research notes that problems with memory and judgement can make getting ethical consent challenging. Caregivers are also an excellent source of input and do not present the same challenges, but the researchers note it is important to gain input from people living with dementia without caregiver influence.
“What we found in our research is that there are ways to productively engage people living with dementia in the design and development of IAT. It may take a bit longer and require additional sensitivity and time on the part of the researchers, but the rewards in terms of usability and adoption are there,” Vollmer Dahlke said.
The review also found that ethical issues with IAT and dementia care go beyond research and application design. There is a growing consensus that the health care cost savings, reduced burden on health care systems and potential for personalized care from IAT adoption would likely benefit people living with dementia. However, concerns about protecting human rights and patient privacy among this vulnerable population loom large. This is especially true as the pace of technological development quickens. One study from the review touched on many of these concerns and developed a set of ethical guidelines. These included publishing an ethical code of conduct, providing training on ethics and responsible innovation, practicing more responsible innovation by engaging a wider range of stakeholders, maintaining transparency in both products and the process by which IAT is made, and making ethical and responsible innovation a core value of the organization.
Current research shows that IAT can play a growing role in helping older adults with dementia lead healthier lives and reducing the burden on family and professional caregivers. However, these technologies must be designed and deployed in an ethical and equitable way to be the most effective and reach the most vulnerable. The researchers identify a need for further developments in guidelines for IAT adoption and a need for caution as IAT can be used in ways that could adversely affect the privacy and dignity of people with dementia. They note that further research is needed to gain a better understanding of the various social and ethical issues in this realm. But, Ory notes, “with careful design and thoughtful implementation, IAT has the potential to dramatically improve the quality of life for many older adults with dementia, as well as their families.”
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