Posted in Caregiving, Research & Best Practice, The Built Environment

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.
Shutterstock

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.
Shutterstock

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.”

[ Expertise in your inbox. Sign up for The Conversation’s newsletter and get a digest of academic takes on today’s news, every day. ]The Conversation

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.

Posted in Caregiving, Dementia, Research & Best Practice, Therapeutic Activities

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

Posted in Caregiving, Dementia, Inspirational quotes & videos, International Campaigns, International Policies, Research & Best Practice, Therapeutic Activities

Personhood

Reading up on all the news, reports and discussions on the aged care royal commission, it makes me wonder if personhood is forgotten in dementia care. Recognition, respect and trust is not rocket science and that’s just common sense. What’s happened to aged care? Why is it that people living with dementia are now being objectified, disrespected and feared in aged care. How did we go so wrong?

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Posted in Caregiving, International Campaigns

International Women’s Day 2019

I hope in a decade when I look back on this post, the world will be a better place for people living with dementia, especially for women.

Jumping into the facts, a study evidently points out that in Singapore, 97% of caregivers for people living with dementia were female; comprising of daughters and daughter in law’s.

In the aged care sector, the workforce comprises of mostly women. In some countries up to 80%.

Our biological differences have seen more women then men living with dementia, and dementia being the leading cause of death for women.

For many of us women, we may be living with dementia, be the primary support for a loved one with dementia or working to formally provide care to a person living with dementia.

It’s important that we support each other and work together to educate the next generation, reducing traditional gender roles to enable more opportunities for a cure as more women move into STEM. Recognise the efforts and responsibilities of women taking on caring roles within the family, one that is of love, patience and pain as they live the long goodbye. Let’s not forget the many care staff in the aged care sector that have been working on minimum wage, understaffed and running off their feet, yet always having a warm smile and love for the people living with dementia that they care for.

Let’s do better for all women living and working with dementia!

Posted in Caregiving, Dementia, Research & Best Practice, Therapeutic Activities

Chemical restraint has no place in aged care, but poorly designed reforms can easily go wrong

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Chemical restraint occurs more often than we think in Australia’s aged care system.
From shutterstock.com
Juanita Westbury, University of Tasmania

Last month the aged care minister Ken Wyatt announced he would introduce regulations to address the use of “chemical restraint” in residential aged care – a practice where residents are given psychotropic drugs which affect their mental state in order to “control” their behaviour.

Psychotropic medications used as “chemical restraints” are antipsychotics, antidepressants, anti-epileptics and benzodiazepines (tranquilisers).

Wyatt followed this announcement this month with a A$4.2 million funding pledge to better monitor care in nursing homes through mandatory “quality indicators”, and including one covering medication management.

Of course, you would be hard pressed to find a staff member admitting to controlling a resident by giving them a tablet. Instead, most staff would stress that medication was given to calm or comfort them.




Read more:
Physical restraint doesn’t protect patients – there are better alternatives


But our research shows psychotropic use is rife in Australia’s aged care system.

Reforms are desperately needed, but we need to develop the right approach and learn from countries that have tried to regulate this area – most notably the United States and Canada.

What’s the problem with antipsychotic drugs?

Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.

But large reviews conclude they don’t work very well. They decrease agitated behaviour in only one in five people with dementia. And there is no evidence they work for other symptoms such as calling out and wandering.

Due to their limited effect – and side effects, including death, stroke and pneumonia – guidelines stress that antipsychotics should only be given to people with dementia when there is severe agitation or aggression associated with a risk of harm, delusions, hallucinations, or pre-existing mental illness.

The guidelines also state antipsychotics should only be given when non-drug strategies such as personalised activities have failed, at the lowest effective dose, and for the shortest period required.




Read more:
Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients


The high rates of antipsychotic use in Australian aged care homes indicates the guidelines aren’t being followed.

In our study of more than 12,000 residents across 150 homes, we found 22% were taking antipsychotics every day. More than one in ten were were charted for these drugs on an “as required” basis.

We also found large variations in use between nursing homes, ranging from 7% to 44% of residents. How can some homes operate with such low rates, whereas others have almost half their residents taking antipsychotic medications?

Regulations to reduce chemical restraint

Of all countries, the US has made the most effort to address high rates of antipsychotic use.

After reports in the 1980s highlighting poor nursing home care, Congress passed the Omnibus Budget Reconciliation Act which sets national minimum standards of care, guidelines to assist homes to follow the law, and surveyors to enforce it.

For residents with dementia and behavioural symptoms, the regulations require documentation of the behaviour, a trial of non-drug strategies such as activity programs, and dose reductions after six months.

Prescribing practices vary widely between institutions.
From shutterstock.com

Homes that don’t meet these regulations are subject to a series of sanctions, ranging from financial penalties to closure.

The regulations were initially associated with substantial declines in antipsychotic use. By 1995 only 16% of residents were taking them.

But average rates of use rose to 26% by 2010. And in 2011, a Senate hearing found 83% of claims for antipsychotics in nursing homes were prescribed for unlicensed use.

This led advocates to conclude the regulations and surveyor guidance were ineffective.

Quality indicators to reduce chemical restraint

Another way to reduce antipsychotic use in aged care homes is by mandatory quality indicators, along with public reporting. The US introduced this in 2012. A similar system was instituted in Ontario, Canada, in 2015.

Measures are essential for quality improvement. But they can also lead to unintended consequences and cheating.

In the US, antipsychotic rates for people with dementia has allegedly reduced by 27% since the start of their quality indicator program.

But those diagnosed with schizophrenia were exempt from reporting. Then the percentage of residents listed as having schizophrenia doubled from 5% to nearly 10% of residents within the first few years of the initiative. So 20% of the reduction was probably due to intentional mis-diagnosis rather than an actual decrease in antipsychotic use.




Read more:
What is ‘quality’ in aged care? Here’s what studies (and our readers) say


A recent US study has also shown that the use of alternative sedating medications not subject to reporting, specifically anti-epileptic drugs, has risen substantially as antipsychotic use declined, indicating widespread substitution.

In Ontario, the use of trazadone, a sedating antidepressant, has also markedly increased since its antipsychotic reporting program began.

Reporting issues

In the US, nursing homes self-report indicators. A recent study compared nursing home data with actual prescribing claims, concluding that homes under-reported their antipsychotic prescribing, on average, by 1 percentage point.

Public reporting is often also time-consuming, with some researchers arguing that time spent managing quality indicators may be better spent providing care for residents.

Where to now?

Awareness of a problem is the first step to addressing it, and chemical restraint is a key issue coming to light in the aged care royal commission.

The proposed regulations and new quality indicator will allow homes and regulators to monitor the use of chemical restraint, but more importantly, should be used to assess the impact of training and other strategies to ensure appropriate use of psychotropic medications.

But to meet their full potential, these programs need to be carefully designed and evaluated to ensure that cheating, under-reporting and substitution does not occur like it did in North America.

Juanita Westbury, Senior Lecturer in Dementia Care, University of Tasmania

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

Posted in Caregiving, International Campaigns, Research & Best Practice

Alzheimer associations in Asia

Asiaorg

Many caregivers in Asia can agree, it’s super hard to find resources and in some countries, it’s hard even to know where to start. When we go online there are so many websites and resources, it’s hard to even know where to start. It’s hard especially when a lot of information tends to be advertisements for private organisations promoting their services. When this post from Monica Cations post popped up on twitter, it was like, wow, what a great idea!

Let’s have one for countries in Asia. The list is below is one for Asia, and if you wish to view the full list of organisations, you can visit https://www.alz.co.uk/associations

Bangladesh *                     www.alzheimerbd.com

Brunei **                            demensia.brunei@gmail.com

China                                     www.adc.org.cn

Hong Kong SAR                 www.hkada.org.hk

Indonesia                            www.alzi.or.id

Japan                                    www.alzheimer.or.jp

Macau SAR                         www.mada.org.mo

Malaysia                              www.adfm.org.my

Philippines                          www.alzphilippines.com

Republic of Korea             www.silverweb.or.kr

Singapore                            www.alz.org.sg

Sri Lanka                              www.alzlanka.org

TADA Chinese Taipei       www.tada2002.org.tw

Thailand                               www.azthai.org