Use of Technology in Dementia Care: Benefits and Ethical Considerations
Dementia describes a grouping of symptoms that occur most often in older adulthood and include declines in cognitive functioning, loss of language abilities, and changes in behavior. All of these symptoms can affect one’s ability to complete everyday activities and, ultimately, to live independently. In 2015, approximately 50 million people worldwide had a diagnosis of dementia, and this number is only projected to increase with a growing aging population (Drew, 2018). The most common form of dementia is Alzheimer’s disease (AD), which affects approximately one third of people with dementia and is characterized by specific brain changes, including an accumulation of proteins and shrinkage of cortical tissue. These changes can begin long before behavioral symptoms start to arise, making it difficult to prevent the progression of the disease or engage in early interventions.
Current treatments for dementia are typically medications, but these can be costly, are often ineffective, and come with a range of adverse side effects. A recent meta-analysis of popular drugs for AD found very small effects in reducing cognitive symptoms (Strohle et al., 2015). The lack of medication effectiveness along with high incidence of unpleasant side effects, such as gastrointestinal disruption, headache, dizziness, and respiratory tract infections further leads to low medication adherence, with discontinuation rates of up to 49% (Wang et al., 2015). Once diagnosed with dementia, the average lifespan is 8-10 years (Drew, 2018), and cognitive and behavioral symptoms worsen during this time, leading most patients to eventually need constant home care or institutional care (i.e., nursing homes, assisted living facilities). Unfortunately, care can also be quite costly. Insurance costs over the last five years of life for an individual with dementia are approximately $121,776, much of which is attributed to institutional care. In addition, families pay an average of $61,522 out of pocket over the last five years in caring for a relative with dementia, which is 81% higher than the average care costs for people with other diseases (Kelley, McGarry, Gorges, & Skinner, 2015). Moreover, informal caregivers for dementia patients – untrained, often unpaid caregivers who are usually family members – show an increased risk for psychological disorders like depression (Chiao, Wu, & Hsiao, 2015), and institutional caregivers (i.e., nursing staff) have elevated stress levels which has led to high rates of turnover (Sun, Mainland, Ornstein, Sin, & Herrmann, 2018). Caregiver burden and the high financial cost of care has led to a crisis in dementia care and a great need for low-cost alternatives.
A response to this need has been the development of intelligent assistive technologies (IATs) that can supplement the help of human caregivers by monitoring health and well-being, providing assistive services, or entertaining and engaging with patients. If successfully implemented, IATs could reduce caregiver burden, lower the cost of care, and improve quality of life for dementia patients by giving them more independence and keeping care based in their homes and communities.
Some common technologies can be thought of as IATs, such as wearable devices that monitor health (e.g., iWatch, FitBit) and devices that help manage the home environment, assist in communication, and keep track of reminders and schedules (e.g., Amazon Echo, Google Home). Even self-driving cars are an example of IATs, as they could help people get around independently who have lost the ability or privileges to drive. Other IATs have been more specifically designed for people with cognitive impairments, such as the Care-O-bot and Robotic Assistant for Mild Cognitive Impairment Patients (RAMCIP), which can control aspects of the home environment like lights, locks, and temperature but can also detect falls, connect the patient to friends and family via video chatting, remind patients to take medications, and even take those medications to patients. These technologies can ensure patient safety, allow patients to remain engaged with friends or family, and help them to complete necessary daily tasks like taking medications.
Another type of IAT is companion robots, which includes robotic animals designed to offer emotional support and interaction with dementia patients. Perhaps the most well-known of these is the companion pet, PARO, a Japanese robotic emotional support animal for the elderly that was designed to look like a baby harp seal. This animal shape was chosen to account for variations in prior experience with more familiar pets like dogs and cats (e.g., some people might be afraid or have negative experiences with common pets) and to allow for greater cross-cultural acceptance, as preferences for type of pet can vary by culture. The seal is designed to recognize words, record where and how a patient touches it, and respond accordingly via body movements and sounds. PARO has the potential to provide all of the benefits of a real pet without the responsibility and continued costs.
A few small studies have been conducted to examine the effects of using PARO in nursing homes and adult day care centers. While these studies have been relatively small and not well-controlled, the evidence suggests that interacting with PARO in group and individual settings may improve mood, reduce levels of stress hormones, encourage and promote social engagement, and reduce depression symptoms and other behavioral issues in patients with dementia (Wada & Shibata, 2006; Wada, Shibata, Saito, Sakamoto, & Tanie, 2005; Wada, Shibata, Saito, & Tanie, 2004). Larger, more controlled studies are still needed to confirm these results, but the early evidence seems promising. Some other robotic animals made to look like dogs and cats also exist, but are less well-studied and may not be as accepted by patients due to prior experiences or preferences.
Robots are even being developed to conduct therapy with dementia patients. One robot, called Nao, is a “humanoid” (human-like robot) that can conduct group therapy by leading music therapy, conducting play activities, practicing language abilities, and leading movement exercises. Because medications can be ineffective and have negative side effects, behavioral interventions are a promising treatment for dementia symptoms, and Nao could potentially help with the application of these interventions.
New technologies for dementia care are rapidly being developed and marketed, and while these have the potential to improve outcomes for patients and reduce burden on caregivers, it is important to address their potential ethical issues. First, only about half of all IATs for use with dementia care have been clinically validated (Ienca et al., 2017), which leads to a lack of understanding and acceptance by patients, doctors, and caregivers. Research on these technologies should be incentivized so we can gain a better understanding of their benefits and risks and expand their reach.
While more research is needed, some protections could be put in place now. Almost all IATs use and record voice data, location data, and sometimes video information. Data privacy and security is important for all technologies, but privacy and security policies for this population may need to be stricter, because dementia patients are generally perceived as a more vulnerable population (Moyle, 2019). In addition, the issue of informed consent is an important one for people with dementia, because cognitive functioning has declined and decision-making capacities may be impaired. While these abilities may be lower in dementia patients, they should still be informed adequately about any known benefits, risks, and proper uses of an IAT before adopting it as an addition to their care. Further, caregivers and doctors should be sufficiently informed and aware of what patients are using, just as they would be for any medication or behavioral intervention. This will allow any risks to be properly monitored and identified.
While IATs have the potential to lower cost of care by reducing the need for constant human care or institutionalization, some may still be quite expensive, which creates a barrier to their use. For example, PARO is currently available for $5,000, making it a good addition to a care facility, but not very feasible for individuals. If IATs are intended to be used for medical purposes, insurance may be able to cover some of the associated costs. Over time and as more technologies become available, the costs may decrease because of competition and greater availability, but it is important that IATs do not benefit only those who can already afford the best care.
Finally, a common concern with the use of IATs is that they will be used to replace human care and interaction, leaving patients more isolated and vulnerable. While this is a serious concern, most IATs are not currently being marketed to replace human care, so it is essential to clearly communicate the intended and proper use to consumers. As IATs become more prevalent and advanced in the next years and decades, this will be increasingly important.
Overall, it seems that IATs could be the future of addressing caregiver burden and financial costs associated with dementia care, while improving behavioral and cognitive outcomes. These technologies have the potential to improve care and lower burden, but it is important to keep in mind their ethical concerns. Current evidence seems to suggest that the benefits are great enough and the risks are low enough to warrant greater adoption and use of IATs by dementia caregivers and patients, but these benefits and risks should be regularly and carefully evaluated with emerging research findings.
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