Using technology to support caregivers of older people with dementia

Technology can be used to support the caregivers of people living with dementia, however, developers and designers need to take caregiver needs into consideration.
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Janet Fast, University of Alberta

In June, the government of Canada released its long-awaited Dementia Strategy for Canada: Together We Aspire.

As a family caregiving researcher for more than two decades and a former family caregiver to my father, who had dementia, the strategy was welcome news. But my own research and personal experience suggest that we’re falling short of the aspiration to be “a Canada in which all people living with dementia and caregivers are valued and supported.”

I agree, perhaps selfishly, that research and innovation are essential for effective implementation of the dementia strategy. AGE-WELL NCE, Canada’s technology and aging network, engages older people, caregivers, product developers and designers in the development of technologies that can make their lives better.

I co-lead the AGE-WELL research project that is responsible for adding to what we already know about caregivers’ needs, developing new technologies to meet those needs and advocating for new policies and practices that will reduce the negative consequences of care. My team’s work shows clearly that caregiving takes a toll on the nearly half million Canadians caring for a family member or friend with dementia. Other caregivers also pay a price: poorer physical and mental health, social isolation and loneliness, financial hardship and insecurity. But that price is steeper when caring for someone with dementia.

Caring time and labour

Caregiving is time-consuming for all caregivers, averaging nine-and-a-half hours per week. It is more time-intensive for dementia caregivers, who provide more than 13 hours per week on average. Collectively, those half million dementia caregivers spent 342 million hours on care tasks in 2012, the equivalent of more than 171,000 full-time employees.

Care also is a different experience for men and women and these differences are more pronounced among dementia caregivers than others. Women dementia caregivers are more likely than men to experience negative health, social, employment and financial outcomes.

Layer on persistent gender wage discrimination and ineffective financial compensation strategies and it’s little wonder that a quarter of female dementia carers experienced care-related financial hardship. These caregivers often modify spending or defer savings to cover care-related expenses. This was a problem for only one in seven of their male counterparts.

Technological support

Existing technologies that can make caregivers’ jobs easier include GPS-enabled tracking and monitoring systems, smartphone and tablet applications, emergency alert systems, tele-health services, networking platforms and many others. But technology adoption and retention is poor, with 70 to 90 per cent of innovations failing.

An understanding caregivers’ needs can help technology developers in the design of apps and products that meet those needs.
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Sometimes this is because available technologies don’t meet caregiver needs very well. Many product designers and developers create the technology for the sake of it, without knowing whether caregivers want it or are prepared to use it. As a result, technology can have both negative and positive impacts on caregivers.

Traditional problem‐focused approaches to technology design can limit discussions to performing caregiving tasks, and fail to capture the complexity of “being in care relationships.” Product developers and designers need to understand caregivers’ complicated lives and unique needs if they’re to develop successful strategies for developing, promoting and delivering technologies to support family caregivers effectively.

Disrupting how we develop technologies by integrating caregivers into design practice so that it’s their experiences and expertise that drive the process is more likely to lead to products and services that solve their real-life problems, improve their well-being and, ultimately, succeed in the marketplace.

Supporting caregivers

While there are technologies and services that can help support caregivers, it’s usually up to caregivers to find them. Navigating a fragmented system of health and social supports is challenging, time-consuming, frustrating and often futile.

One of our team’s projects is addressing this challenge by applying a new type of artificial intelligence called cognitive computing. We have created an online tool that connects family caregivers to products that will support them and their family member or friend with dementia.

It will be far more specific and powerful than the usual search engines, allowing family carers to describe in plain language the problem they want to solve.

CARE-RATE uses cognitive computing to support caregivers looking for information and support.

A second project uses a co-creation process that taps caregivers’ experiences to develop a web portal that provides ongoing follow-up and training in the use of mobility aids such as canes, walkers, wheelchairs or scooters, when and where they need it.

A third project is asking caregivers to tell [researchers] about their preferences and priorities for technological solutions to some of their biggest challenges.

As our population grows older, disability rates increase and pressure on our health and continuing care sectors also grows. We have to understand, recognize and support family caregivers and their valuable work if we’re to meet the challenge.

Of course, technology alone is not enough to sustain the largely unpaid work of family caregivers. According to University of Birmingham social policy professor Paul Burstow, “getting the balance right between ‘tech’ and ‘touch’ is vital.”

From my perspective:

“We need to recognize the value of family caregivers’ work and their right to ‘have a life[’]; ensure that there are adequate, accessible and affordable services for care receivers and caregivers; organize workplaces and labour policy so that caregivers can keep earning a living alongside their care work as long as possible; and when caregiving still results in financial hardship for some, we need to be ready with anti-poverty measures.”

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Janet Fast, Professor and Co-Director, Research on Aging, Policies and Practice, University of Alberta

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Dementia: Why we find it difficult to stay awake in the day and sleep at night?

Study Suggests Tau Tangles, Not Amyloid Plaques, Drive Daytime Napping That Precedes Dementia

Researchers and caregivers have noted that excessive daytime napping can develop long before the memory problems associated with Alzheimer’s disease begin to unfold. Prior studies have considered this excessive daytime napping to be compensation for poor nighttime sleep caused by Alzheimer’s-related disruptions in sleep-promoting brain regions, while others have argued that the sleep problems themselves contribute to the progression of the disease. But now UC San Francisco scientists have provided a striking new biological explanation for this phenomenon, showing instead that Alzheimer’s disease directly attacks brain regions responsible for wakefulness during the day.

two people talk in a lab
Lea Grinberg (right), MD, PhD, the senior study author

The new research demonstrates that these brain regions (including the part of the brain impacted by narcolepsy) are among the first casualties of neurodegeneration in Alzheimer’s disease, and therefore that excessive daytime napping – particularly when it occurs in the absence of significant nighttime sleep problems – could serve as an early warning sign of the disease. In addition, by associating this damage with a protein known as tau, the study adds to evidence that tau contributes more directly to the brain degeneration that drives Alzheimer’s symptoms than the more extensively studied amyloid protein.

“Our work shows definitive evidence that the brain areas promoting wakefulness degenerate due to accumulation of tau – not amyloid protein – from the very earliest stages of the disease,” said study senior author Lea T. Grinberg, MD, PhD, an associate professor of neurology and pathology at the UCSF Memory and Aging Center and a member of the Global Brain Health Institute and UCSF Weill Institute for Neurosciences.

Wakefulness Centers Degenerate in Alzheimer’s Brains

In the new study, published August 12, 2019, in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, lead author Jun Oh, a Grinberg lab research associate, and colleagues precisely measured Alzheimer’s pathology, tau protein levels and neuron numbers in three brain regions involved in promoting wakefuless from 13 deceased Alzheimer’s patients and seven healthy control subjects, which were obtained from the UCSF Neurodegenerative Disease Brain Bank.

Compared to healthy brains, Oh and colleagues found that the brains of Alzheimer’s patients had significant tau buildup in all three wakefulness-promoting brain centers they studied – the locus coeruleus (LC), lateral hypothalamic area (LHA), and tuberomammillary nucleus (TMN) – and that these regions had lost as many as 75 percent of their neurons.

portrait on Jun Oh.
Jun Oh, lead author of the study. 

“It’s remarkable because it’s not just a single brain nucleus that’s degenerating, but the whole wakefulness-promoting network,” Oh said. “Crucially this means that the brain has no way to compensate because all of these functionally related cell types are being destroyed at the same time.”

Oh and colleagues also studied brain samples from seven patients with progressive supranuclear palsy (PSP) and corticobasal disease (CBD), two distinct forms of neurodegenerative dementia caused by tau accumulation. In contrast to the Alzheimer’s disease brains, wakefulness-promoting neurons appeared to be spared in the PSP and CBD brains, despite comparable levels of tau buildup in these tissue samples.

“It seems that the wakefulness-promoting network is particularly vulnerable in Alzheimer’s disease,” Oh said. “Understanding why this is the case is something we need to follow up in future research.”

Studies Point to Role of Tau Protein in Alzheimer’s Symptoms

The new results are in line with an earlier study by Grinberg’s group which showed that people who died with elevated levels of tau protein in their brainstem – corresponding to the earliest stages of Alzheimer’s disease – had already begun to experience changes in mood, such as anxiety and depression, as well as increased sleep disturbances.

“Our new evidence for tau-linked degeneration of the brain’s wakefulness centers provides a compelling neurobiological explanation for those findings,” Grinberg said. “It suggests we need to be much more focused on understanding the early stages of tau accumulation in these brain areas in our ongoing search for Alzheimer’s treatments.”

These studies add to a growing recognition among some researchers that tau buildup is more closely linked to the actual symptoms of Alzheimer’s than the more widely studied amyloid protein, which has so far failed to yield effective Alzheimer’s therapies.

For instance, another recent study by the Grinberg lab measured tau buildup in the brains of patients who died with different clinical manifestations of Alzheimer’s disease, including variants that involved language impairment or visual problems instead of more typical memory loss. They found that differences in local tau burden in these patients’ brains closely matched their symptoms: patients with language impairments had more tau accumulation in language related brain areas than in memory regions, while patients with visual problems had higher tau levels in visual brain areas.

“This research adds to a growing body of work showing that tau burden is likely a direct driver of cognitive decline,” Grinberg said.

Increased focus on the role of tau in Alzheimer’s suggests that treatments currently in development at UCSF’s Memory and Aging Center and elsewhere that directly tackle tau pathology have the potential to improve sleep and other early symptoms of Alzheimer’s disease, in addition to holding a key to slowing the progress of the disease overall, the authors say.

Authors: See study online for full list of authors.

Funding: This study was supported by The Rainwater Foundation and grants from the National Institutes of Health (R01AG064314, R01AG060477, P50AG023501, P01AG019724, K24AG053435), the Global Brain Health Institute, and the São Paulo Research Foundation (FAPESP).

Disclosures: The authors declare no conflicts of interest.

The University of California, San Francisco (UCSF) is exclusively focused on the health sciences and is dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes UCSF Health, which comprises three top-ranked hospitals, as well as affiliations throughout the Bay Area.

Source
August 2019| The Regents of The University of California – Alzheimer’s Disease Destroys Neurons that Keep Us Awake By Nicholas Weiler