Tag Archives: Caregivers

The onset of Alzheimer’s disease: the importance of family history

News Release
February 26, 2018 | QUEBEC – The onset of Alzheimer’s disease: the importance of family history

You’re about to turn 60, and you’re fretting. Your mother has had Alzheimer’s disease since the age of 65. At what age will the disease strike you? A Canadian study published in JAMA Neurology shows that the closer a person gets to the age at which their parent exhibited the first signs of Alzheimer’s, the more likely they are to have amyloid plaques, the cause of the cognitive decline associated with the disease, in their brain.

In this study involving a cohort of 101 individuals, researcher Sylvia Villeneuve (Douglas Mental Health University Institute; CIUSSS de l’Ouest-de-l’Île-de-Montréal) shows that the difference between a person’s age and the age of their parent at the onset of the disease is a more important risk factor than their actual age.

A 60-year-old whose mother developed Alzheimer’s at age 63 would be more likely to have amyloid plaques in their brain than a 70-year-old whose mother developed the disease at age 85,” explains Villeneuve, an assistant professor at McGill University and a core faculty member at The Neuro’s McConnell Brain Imaging Centre.

Her team of scientists also found that the genetic impact of Alzheimer’s disease is much greater than previously thought.

“Upon examining changes in the amyloid biomarker in the cerebrospinal fluid samples from our subjects, we noticed that this link between parental age and amyloid deposits is stronger in women than in men. The link is also stronger in carriers of the ApoE4 gene, the so-called ‘Alzheimer’s gene’,” says Villeneuve.

Towards earlier detection of the disease

The researcher and her team successfully duplicated their results in two independent groups, one, consisting of 128 individuals from a University of Washington-St. Louis cohort, the other consisting of 135 individuals from a University of Wisconsin-Madison cohort. They also reproduced their results using an imaging technique that enables one to see amyloid plaques directly in the brains of living persons.

Their study is paving the way for the development of inexpensive methods for the early identification of people at risk for Alzheimer’s disease. According to the Alzheimer Society of Canada, 564,000 Canadians currently have Alzheimer’s disease or another form of dementia. The figure will be 937,000 within 15 years. Presently, there is no truly effective treatment for this disease.

This research was funded by grants from a Canadian research chair, the Canadian Institutes of Health Research, the Canadian Foundation for Innovation, the Canadian Brain Research Fund, the Alzheimer Society of Canada, and the Fonds de recherche du Québec — Santé.

The article entitled “Proximity to parental symptom onset and amyloid burden in sporadic Alzheimer’s disease” was published in JAMA Neurology on February 26, 2018. DOI:10.1001/jamaneurol.2017.5135

Source: http://www.douglas.qc.ca/?locale=en

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“Pop Drop” Study finds more ER visits & higher costs for older disabled patients with stressed caregivers

News release

“Pop Drop” Study finds more ER visits & higher costs for older disabled patients with stressed caregivers

Fatigue, sadness and poor health among the spouses who take care of disabled elders can mean higher Medicare bills for the patients.

Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.

It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.

In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.

The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.

Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.

Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.

The cost of unpaid help

“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”

“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M. “Our findings suggest that we need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.”

Long-term data gives key insights

The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.

The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.

Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.

Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.

More research & services needed

Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.

Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.

“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”

Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.

Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.

Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.

One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.

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Claire
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M.D., M.P.H.

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M.D., M.P.H.

Older Adults Are Still Likely Underestimating Cognitive Impairment in Their Families

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News release

 Study Finds Racial Differences in Reporting and Overall Trend of Underreporting Cognitive Impairment

An increasing number of older adults are reporting cognitive impairment in their families over the past two decades, according to a new study led by researchers at NYU Rory Meyers College of Nursing and East Carolina University’s Brody School of Medicine.

The study, which also finds ethnic and racial differences in reporting cognitive impairment, is published in Preventing Chronic Disease, a journal of the Centers for Disease Control and Prevention.

The aging population in the U.S. is growing rapidly, with the number of people age 65 and over in 2010 (40.2 million) projected to more than double by 2050. With the rapid increase in the aging population, the size of the population with cognitive impairment and dementia will continue to accelerate, highlighting the importance of identifying cognitive changes.

“Cognitive impairment may serve as a precursor to future dementia. Early detection of cognitive impairment can facilitate timely medical treatments, appropriate care planning, and prevention efforts,” said Bei Wu, PhD, Dean’s Professor in Global Health and director of Global Health & Aging Research at NYU Meyers, co-director of NYU Aging Incubator, and the study’s senior author.

The study sought to examine the trends of self-reported cognitive impairment among five major racial/ethnic groups from 1997 to 2015 in the United States. The researchers used data from the National Health Interview Survey, including 155,682 individuals age 60 and above in their sample. The large sample included people of a variety of races and ethnicities, including Asian Americans,  Blacks, Hispanics, Native Americans, non-Hispanic Blacks, and non-Hispanic Whites.

Rather than using a screening test or clinical examination to evaluate cognitive impairment, respondents were asked to report if any family member was “limited in anyway because of difficulty remembering or because of experiencing periods of confusion.”

The researchers found an increasing trend in self-reported cognitive impairment: the overall rate increased from 5.7 percent in 1997 to 6.7 percent in 2015 among older adults in the U.S. This finding may suggest that awareness of cognitive impairment, perhaps from heightened public attention to and interest in Alzheimer’s disease, has improved to some extent.

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When looking at each racial/ethnic group, however, the increasing trend was significant only among White respondents. In Whites, the rate of self-reported cognitive impairment increased from 5.2 percent in 1997 to 6.1 percent in 2015. Asian American, Black, Hispanic, and Native American respondents had higher rates of self-reported cognitive impairment than Whites, but these rates did not significantly increase from 1997 to 2015.

Regardless of the overall increasing trend, the rates of self-reported cognitive impairment were still low, which may suggest underreporting. The researchers note that the rates of self-reported cognitive impairment are much lower than the estimated prevalence of cognitive impairment. For adults 65 years and older, the rate of self-reported cognitive impairment was 6.3 percent in 2000 and 7.5 percent in 2012, while the estimated prevalence of cognitive impairment in the same age group was 21.2 percent in 2000 and 18.8 percent in 2012.

These findings underscore the need to further promote awareness of cognitive impairment, especially in minority populations. Different cultures hold different beliefs and perceptions of disease and aging. For instance, research has found that compared to Whites, minorities are less likely to seek treatment for psychiatric symptoms because of lack of access to care or due to stigma.

“Culturally specific health education is needed in individuals, family members, and healthcare providers to improve awareness and knowledge of signs and early symptoms of Alzheimer’s and other dementia,” said Huabin Luo, PhD, of East Carolina University.

In addition to Wu and Luo, Gary Yu of NYU Meyers coauthored the study.

Poem: Do not ask me to remember

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‘Hundreds’ of Young Adults in Older Adults Care Homes

A recent article by BBC Scotland health correspondent touches on the plights of younger adults placed in care homes for the elderly due to the lack of services in the community.

Romana (seen below) is one of the many in Scotland who was placed in a care home for the elderly when she suffered a brain haemorrhage at the age of 23, whilst pregnant.

Given the non-purpose built environment, the community in the care home and the level of services of care, it was no appropriate for a person such a Romana. She felt she had lost her family. It took 2 years before she was offered a place in a neurological centre in Aberdeen according to the article.

Pamela Mackenzie (Sue Ryder’s assistant director Scotland) was quoted as saying that “Romana was quite a different lady when she first came. She was withdrawn and depressed and she really had been written off.”

This is certainly an important issue to address the inequalities in care and ensure that younger adults attain the right services that need for rehabilitation to enable them to return to their families.

Image from the original article, for more information read: ‘Hundreds’ of young in old people’s homes

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.

Fixed vs. Growth Mindsets

Life is a constant learning journey; and in this book by Stanford University psychologist Carol Dweck, she has distilled her decades of research into a book to help people to achieve more by thinking about the power of our mindset and how we can improve it. Have a look at the Fixed vs Growth Mindset below and in her book she goes on to talk about how we can rewire our mindets to become better at what we do.

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How to fine-tune the internal monologue that scores every aspect of our lives, from leadership to love.

Read more about it here: Fixed vs. Growth: The Two Basic Mindsets That Shape Our Lives – Brain Pickings