How can we help caregivers and patients diagnosed with Alzheimer's disease using our current technology
After many years working in Alzheimer's research, studying rodent models and participating in awareness walks, I decided to look at viable options to help patients and their caregivers. With today's generation relying on smartphones, why not use the technology to help patients diagnosed with Alzheimer's disease.
Why is this disease important?
Alzheimer’s disease (AD) is the most common neurodegenerative disease and 6th leading cause of death in the USA.
The disease is characterized by slow and irreversible damage to nerve cells leading to cognitive impairments such as memory loss and becoming disoriented. It ultimately leads to all intellectual dysfunction. In 2016, AD affects 5.5 million Americans and 24 million worldwide (Mayeux & Stern, 2012). As the population in established and developed countries is steadily growing with longer lifespans, older people are expected to live with more impairments that may affect one’s ability to perform regular activities.
AD patients present a costly burden on families and relatives as medical impairments lead to complete dependence on external care and lower quality of life (Hoe et al., 2009). In the US, more than 16 million people are caring for someone with dementia. According to the conference board of Canada (2013), ten selected chronic diseases including AD generates an estimated economic burden of $119 billion in 2010, up from $79 billion in 2000.
Medical caregiving businesses aiming to alleviate the patients’ family burden would benefit from a large growing demand as the economy in the medical field is rising and a growing number of people turn towards the convenience of technology.
The need for help for everyday activity is inevitable. Patients’ caregivers are often family members (e.g. spouse) who suffer from out-of-pocket expenses due to financial strains and show higher levels of depression and anxiety (Schulz & Eden, 2016). Although caregivers of adult patients can benefit from workplace and government policies and programs, few places will support time off for caregiving, leaving the caregiver with great risks of severe financial consequences and emotional distress (Schulz & Eden, 2016).
The goal is to create a smartphone application to relieve the caregiver’s daily tasks by promoting autonomy and creativity in AD patients, thus lessening the burden of constant attention and care. As people embrace more and more technology, using an application can be a suitable solution to AD patients and their caregivers. It brings up a wide variety of advantages such as the 24/7 accessibility, the anonymity and the convenience of staying at home.
The application will include a platform to socialize within the community, the ability to meet face-to-face, to share one’s story and tips on symptom managements. Both caregivers and AD patients are welcome to join as either individual or groups. Daily tasks such as teeth brushing, mealtime, errands, or washing hands will be recorded in a personalized calendar to send notifications to AD patients to promote autonomy as a tool for memory loss.
Premium options ($$$) will include online chat with a certified nurse, games to stimulate cognitive skills, doctor’s appointment reminders. The best feature is a quiz, uploading pictures of family members and friends. The app will quiz the AD patient at random interval whose face are on the pictures to maintain name retention and memory. Caregivers may include special memories or random visual cues to the quiz and the AD patient may answer with a pre-recorded answer.
For the Family:
Give yourself a break
Reduced stress and peace of mind
More time, avoid burning out
For the patients:
Elderly people (> 65 years old) are at higher risks to develop the disease. They represent a vulnerable population, often anxious and depressed, therefore an online application that is easily accessible will promote their social life from the convenience of home and relieve their caregiver of stress. Patients will benefit from centralized information on their disease, current updates on new research findings, and staying connected to peers. Peer support has been shown to uplift one’s mood and lessen feelings of isolation and depression. Patients with a supportive social network were reported to have better recovery, earlier discharge and less disease recurrence than patients with no support group. Research also found that online peer support yielded similar results as in person support group.
Living with AD could still represent a stigma for some patients. Feelings of shame may arise in certain cultures that view cognitive decline as a sign of weakness. Providing anonymous online support may be beneficial for people with this fear.
Conclusion and limitations
Although the development would be feasible and realistic, what are the chances that our current AD patients would use the app on a regular basis, let alone having a cellphone at all for some. Since most of the patients are older and not tech-savvy, perhaps, this app would have greater potential for us when we get older.
When one lives with a devastating disease, the first instinct is to get information about what's affecting us. But the long-term usage of the app would not be guaranteed, as medical information, often depressive would not be conducive to enjoying a good optimistic end of life. As the disease progress, patients will slowly "forget" to use the app and go back to the essential, which is spending time with their family members and going through their routine.
Interacting with a caregiver gives the opportunity to give and receive natural human warmth.
For some people, in-person services is truly invaluable. Some people enjoys "seeing" the other person during a medical appointment. Nothing makes it more impersonal and lonely than using an app to replace real physical connection. Moreover, the nurse online chat would only repeat what the primary physical already explained to the patient.
Although the idea of an app sounds practical and useful for daily tasks, it would not replace our current caregiving system (maybe not yet). Human interactions are priceless and no app can replace genuine empathy. In the meantime, check out your Alzheimer's disease center, some may offer the opportunity to volunteer and spend time with patients. This could make someone's day and yours too!
Hoe, J., Hancock, G., Livingston, G., Woods, B., Challis, D., & Orrell, M. (2009). Changes in the Quality of Life of People With Dementia Living in Care Homes. Alzheimer Disease & Associated Disorders, 23(3), 285–290. https://doi.org/10.1097/WAD.0b013e318194fc1e
Mayeux, R., & Stern, Y. (2012). Epidemiology of Alzheimer disease. Cold Spring Harbor Perspectives in Medicine, 2(8), 1–18. https://doi.org/10.1101/cshperspect.a006239
Schulz, R., & Eden, J. (2016). Families caring for an aging America. Families Caring for an Aging America. https://doi.org/10.17226/23606