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.

Australia’s Dogs 4 Dementia is Expanding!

Great news! Australia’s dogs 4 dementia program is expanding! Yeah! I remember seeing their booth at a dementia conference in 2012 thinking, wow I hope that this program continues to grow because it sure is a fantastic idea.

This is a collaboration between Hammondcare and Assistance Dogs Australia (ADA). A six to ten months training is required before the lovely dogs start assisting The assistance dogs can help to provide
– a routine
– help with reminders
– emotional support
– help around the house (close cupboards, pick up items etc.)

Here’s a video from ABC about Dogs 4 Dementia (See below), for an earlier post with more videos on dogs caring for people with dementia in Australia and in Scotland, read Happy National Dogs Day. Or click here for the ABC article on Dogs 4 Dementia.

An Amazing Music and Memory Program for Dementia

If you have 5 mins today, you’ve got to watch this video on music, memory and dementia that is being carried out in the Redleaf manor aged care home in New South Wales, Australia. The video (ABC iview-catalyst) shares with viewers insight into this new programme on personlised playlist that can greatly improve the quality of life and well-being of the individual.

The programme helps people to
– reconnect with family
– brings people out of their shell
– brings out positive emotions

Music should be accessible in all care facilities, and prescribed music can help to elevate agitation and reduce the use of antipsychotics (medications)in a study by Standford University.

Music is the only stimulus that activates a range of centres in the brain, aside from memories (temporal lobe and amygdala), music also touches on the movement centres and emotional. This gives answers to the reactions that occur when a person with dementia listens to music despite the progressive deterioration of the brain.

Looking back at our infants, how many of us have played music or sang our babies to sleep? In prelinguistic stages, the environment consists of music and sounds of happiness or sadness or fear. Babies react to the powerful effect of music.

Music is a powerful medium that it is pivotal to our brain’s health.

You can watch the 30min episode here but it’s only available for people living in Australia
http://iview.abc.net.au/programs/catalyst/SC1502H006S00, for those living outside of Australia you can try this link http://www.abc.net.au/catalyst/stories/4421003.htm .

Care staff gets a taste of living with dementia

Oxford Brookes University has devised a training programme to help staff working with people with dementia to come close to understanding the experience of living with dementia. This programme is carried out by a facilitator and participants have to wear a stimulation suit as part of the process. This aids the experiential learning process and creates some awareness of the needs of the individual with dementia.

The programme has proved to be successful and has helped care workers to better understand the experience of living with dementia; and in turn influence and improve the quality of care that they provide to the people they care for.

You can read more about the programme here here http://www.chc.brookes.ac.uk/training/dementia-simulation

 

 

Illegal Money Lenders, Domestic Helpers, Family Caregivers & Dementia

Recent news reports from Hong Kong have highlighted the plight of four domestic helpers that committed suicide as a result of being victims of debt and association with illegal money lenders.

In countries such as Singapore, Hong Kong, Malaysia, Thailand, domestic helpers are needed in the community. They provide support and care for many older adults living in the community allowing them to age in place in their homes (Yeo 2014); this includes people with or without dementia. Many of helpers are live in caregivers for older adults; providing round the clock care, be it toileting at three in the morning or escorting them to an activity at three in the afternoon, they will be there. Live in helpers provide a much-needed service and care for many of us who strive to keep our loved homes at home instead of institutionalisation, think nursing home.

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For those who are not familiar with foreign domestic help in Asia, you may wish to read the two article below.

Read about Mylene and Yu Heng’s story here

Read about Ms Mersi Fransina Missa story here

Live-in domestic helpers consist of mostly women from Philipines, Myanmar, Indonesia or even Thailand. The job of a domestic helper covers a range of responsibilities;

  • Cooking nutritious culturally specific meals
  • Ensuring clean and sanitary environment
  • Carrying out personal hygiene
  • Household maintenance
  • Provide activities as specified by the employers or therapist
  • Escorts and transport
  • Nursing care. (Nursing care may cover anything from medication administration, basic wound dressings to cleaning out a colostomy bag.)

Our loved ones with dementia who are being cared for by these dedicated helpers, may not be able to recognise the signs of stress that helpers may be experiencing when faced with debt. It is important that guardians, employers and policy makers provide the support and education to ensure that the helpers caring for our older adults do not fall prey to these manipulative schemes. Migrating to a foreign country to care for an older adult is not an easy task, leaving family and friends to provide 24-hour care to a stranger. Yes, there is an acknowledgement of choice and payment, but that is not to say that it is a difficult task none the less.Open communication, education about finances and an outlet to seek help to helpers is needed. This will help to prevent them from becoming a target for loan sharks/illegal money lenders who show up at the door and harassing the helper.

In a news article from Philstar global, Emily Lau, a Legislative Councillor from Hong Kong was quoted as saying “The main reason these women are in debt is because governments allow agents to collect so much money from them.” On top of that, the South China Morning Post had reported that agencies were found working with creditors, imposing loans on helpers at rates so high that they are deemed illegal. Caught in a distant land, with family at home to support, harassed by money lenders and debt appears to have no end in sight. It is sad that lives are lost because of these vile schemes.

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For the hardworking and dedicated helpers who are protecting our loved ones with dementia from institutionalisation and helping them to maintain a good quality of life. We need to in turn assist them and ensure they do not fall prey to scheming smooth talking illegal moneylenders. These illegal money lenders or loan sharks promise fast and easy solution; on the pretence of providing helpers with a hand with loans. Only to trap them in a mountain of debt, bound with harassment and threats that have resulted in a lost of lives due to these tragic circumstances.