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Better communication needed in Alzheimer’s care, says new report

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A new report from the Alzheimer’s Association highlights the need for better patient-doctor communication as new treatments for the disease become available.

While recent advancements in treatment of early-stage Alzheimer’s are providing hope to millions living with memory loss and early cognitive decline, a new report finds too often individuals with memory concerns and their doctors are not discussing the issue, missing a critical first step toward diagnosis and potential treatment.

The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report estimates that 6.7 million people 65 and older are living with Alzheimer’s dementia, one of the costliest conditions to society. 

This year, the national cost of caring for individuals living with Alzheimer’s or other dementias in the US is projected to reach $345 billion — a $24 billion increase from a year ago.

An accompanying special report, The Patient Journey In an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns. 

Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their health care providers. Previous special reports have indicated many people believe their experiences are related to normal ageing, rather than a potential diagnosable medical condition.

Maria C Carrillo, PhD, chief science officer, Alzheimer’s Association, commented: “Providing the best possible care for Alzheimer’s disease requires conversations about memory at the earliest point of concern and a knowledgeable, accessible care team that includes physician specialists to diagnose, monitor disease progression and treat when appropriate.

“For the first time in nearly two decades, there is a class of treatments emerging to treat early-stage Alzheimer’s disease. It’s more important than ever for individuals to act quickly if they have memory concerns or experience symptoms.”

The annual report provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care. 

This year it also examines the capacity of the medical specialty workforce essential for diagnosis, treatment and ongoing care for people living with Alzheimer’s and all other dementia. 

The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care, especially with the recent FDA accelerated approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the health care landscape for people with early-stage Alzheimer’s or mild cognitive impairment due to Alzheimer’s disease.

Risks outweigh benefits of speaking about memory issues

Many Americans could potentially be eligible for new and emerging treatments, assuming they receive a timely diagnosis and want medical intervention. 

Yet most focus group participants said their memory and thinking problems would need to have a significant negative impact on their quality of life or the lives of their family members in order for it to warrant a discussion with their physician.

Concerns about receiving an incorrect diagnosis, learning of a serious health problem, receiving unnecessary treatment and believing symptoms might go away on their own also make people reluctant to broach the topic of cognitive impairment. 

Furthermore, most participants said they would be more comfortable talking to a friend about memory and thinking problems than a medical professional.

Different racial and ethnic groups express concerns about care delivery and specific barriers to care, which influences their interactions with healthcare providers. For example, Black Americans, American Indians, Alaska Natives and Hispanic Spanish-speaking Americans strongly preferred holistic approaches to treatment that minimise the use of biomedical interventions or prescription medication.

Black Americans, American Indians and Alaska Natives indicated the presence of historical racism in the medical field, which makes many individuals feel that they do not receive adequate, culturally competent care. 

Some participants also indicated that their community’s mistrust of doctors and/or Western medicine prevents them from talking to a doctor.

In addition to reluctance from individuals, the focus groups revealed that PCPs are not proactively asking their patients about cognitive issues either.

PCPs shared that they hesitate to initiate conversations about cognitive decline and will wait until family members bring it to their attention.

PCPs expressed concern about how people will be cared for if an assessment uncovers Alzheimer’s disease or other dementia in light of specialist shortages and few referral options.

Importantly, PCPs view family members as influential and critical partners in care, often relying on them to initiate conversations about memory and thinking problems they observe in their loved ones, making the role of caregivers ever more significant.

“Both physicians and patients need to make discussions about cognition a routine part of interactions,” said Nicole Purcell, D.O., M.S., a neurologist and senior director, clinical practice, Alzheimer’s Association. 

“These new treatments treat mild cognitive impairment or early-stage Alzheimer’s disease with confirmation of amyloid, so it’s really important that conversations between patients and doctors happen early or as soon as symptoms occur, while treatment is still possible and offers the greatest benefit.”

Taking action: Navigating early intervention

PCPs shared starting a clinical visit with an informal conversation may provide important cues to help inform a formal cognitive assessment. Short appointment times can make it difficult to notice subtle changes in a patient’s thinking over time, so many PCPs suggested a consistent, standardised process to begin visits would help overcome barriers to initiating conversations independently.

Family members are crucial in facilitating conversations and follow up care for loved one’s memory and thinking issues. In fact, almost all PCPs interviewed learned of their patients’ memory problems when a family member communicated concerns rather than hearing directly from the patients themselves. Many felt the issues were more serious when a relative provided an outside perspective. PCPs noted patients were generally more accepting of their issues and the need to address them when a family member or caregiver attended their visit.

Challenges across the specialist physician workforce

As the prevalence of Alzheimer’s disease and other dementias increases from 6.7 million today to nearly 13 million by 2050, so does the need for a larger paid workforce involved in diagnosing, treating and caring for those living with these diseases. 

The special report examined the current specialist physician workforce capacity for Alzheimer’s care in the US.

Emergency medicine specialists see the most patients age 60 or older, as compared to geriatricians, neurologists and neuropsychologists, yet specialists said their neurology and geriatrician colleagues could most effectively diagnose Alzheimer’s disease.

Neurologists and geriatricians are also viewed by other specialists as best able to recommend treatments for Alzheimer’s disease. Geriatricians are viewed as the best able to provide ongoing care for people living with Alzheimer’s.

New treatment advances have generated excitement and hope — as well as many questions — for people living with early-stage Alzheimer’s and MCI due to Alzheimer’s. Whether the approval of treatment options will stimulate more conversations between people experiencing cognitive decline and their health care providers remains to be seen.

However, shortages of geriatricians and neurologists necessary to care for the aging U.S. population — which is expected to grow from 58 million people 65 and older in 2021 to 88 million by 2050 — remains a major challenge.

“If specialists receive an influx of referrals to evaluate new patients for cognitive impairment, the specialist shortage is likely to have the most immediate and obvious impact on people at the early phase of Alzheimer’s disease — those who may be eligible for newly approved treatments,” Purcell said.

Currently, there are more than 140 unique therapies that are being tested in clinical trials that target multiple aspects of Alzheimer’s biology. As the world’s largest non-profit funder of Alzheimer’s research, the Alzheimer’s Association is currently investing more than $320 million in over 1,000 active best-of-field projects in 54 countries, spanning six continents.

Full text of the 2023 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, “The Patient Journey In an Era of New Treatments” is available here

Wellness

Music may have health benefits for older adults, finds poll

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From stress relief and improved mood to keeping minds sharp and connecting to others, a poll of people aged 50 to 80 finds many positives from listening to or making music.

Whether it’s singing in a choir, playing the living room piano, joining in hymns at church, or just whistling along with the radio, a new poll finds that nearly all older adults say music brings them far more than just entertainment.

Three-quarters of people age 50 to 80 say music helps them relieve stress or relax and 65 per cent say it helps their mental health or mood, according to the new results from the University of Michigan National Poll on Healthy Aging. Meanwhile, 60 per cent say they get energised or motivated by music.

Those are just a few of the health-related benefits cited by older adults who answered questions about listening to and making music of all kinds.

Virtually all (98 per cent) said they benefit in at least one health-related way from engaging with music. In addition, 41 per cent say music is very important to them, with another 48 per cent saying it’s somewhat important.

“Music has the power to bring joy and meaning to life. It is woven into the very fabric of existence for all of humankind,” said Joel Howell, M.D., Ph.D., a professor of internal medicine at the U-M Medical School who worked with the poll team.

Music also has tangible effects on a variety of health-related ailments, he adds. “We know that music is associated with positive effects on measures from blood pressure to depression.”

The poll is based at the U-M Institute for Healthcare Policy and Innovation and supported by AARP and Michigan Medicine, the University of Michigan’s academic medical centre. The poll team asked a national sample of adults aged 50 to 80 about their experiences with and feelings toward listening to and making music.

Many older adults reported making music with other people at least occasionally, whether by singing or playing an instrument. In all, eight per cent said they have sung in a choir or other organised group at least a few times in the past year. About eight per cent of all older adults said they play an instrument with other people at least occasionally.

In all, 46 per cent of older adults reported singing at least a few times a week, and 17 per cent said they play a musical instrument at least a few times a year.

Most respondents reported listening to music, with 85 per cent saying they listen to it at least a few times a week, 80 per cent saying they’ve watched musical performances on television or the internet at least a few times in the past year, and 41 per cent saying they had attended live musical performances in person at least a few times in the past year. That latter percentage was higher among those with higher incomes and more education.

The poll shows other differences between groups in music listening habits and health impacts.

Those who said their physical health is fair or poor, and those who say they often feel isolated, were less likely to listen to music every day. Black older adults were more likely than others to have sung in a choir in the past year, and Black and Hispanic older adults were more likely to say that music is very important to them.

“While music doesn’t come up often in older adults’ visits with their usual care providers, perhaps it should,” said poll director Jeffrey Kullgren, M.D., M.P.H., M.S.

“The power of music to connect us, improve mood and energy, or even ease pain (like 7% of respondents said it does for them), means it could be a powerful tool.” Kullgren is a primary care physician at the VA Ann Arbor Healthcare System and associate professor of internal medicine at U-M.

Howell notes that music helps people keep in touch with one another throughout their lifetime. Indeed, 19 per cent of the poll respondents said music is even more important to them now than it was in their youth, and 46 per cent said it’s just as important to them now as then.

With the rising concern about the health effects of loneliness and social isolation among Americans in general, and especially among older adults, the power of music to connect people and support healthy aging should not be underestimated, Howell says. The NPHA has previously reported on trends in loneliness and social isolation in older adults.

“Music is a universal language that has powerful potential to improve wellbeing,” said Sarah Lenz Lock, senior vice president of Policy and Brain Health at AARP and executive director of the Global Council on Brain Health.

“AARP’s own research shows that music can play an important role in healthy aging by improving our moods, fostering social connections and, potentially, enriching our brain health.”

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Wellness

Playing an instrument linked to better brain health in older adults – study

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Engaging in music throughout your life is associated with better brain health in older age, according to a new study published by experts at the University of Exeter.

Scientists working on PROTECT, an online study open to people aged 40 and over, reviewed data from more than a thousand adults over the age of 40 to see the effect of playing a musical instrument – or singing in a choir – on brain health.
This study is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South West Peninsula (PenARC) and NIHR Exeter Biomedical Research Centre.
Over 25000 people have signed up for the PROTECT study, which has been running for 10 years. The team reviewed participants’ musical experience and lifetime exposure to music, alongside results of cognitive testing, to determine whether musicality helps to keep the brain sharp in later life.
The findings show that playing a musical instrument, particularly the piano, is linked to improved memory and the ability to solve complex tasks – known as executive function. Continuing to play into later life provides even greater benefit.
The work also suggests that singing was also linked to better brain health, although this may also be due to the social factors of being part of a choir or group.
Anne Corbett, Professor of Dementia Research at the University of Exeter said: “A number of studies have looked at the effect of music on brain health. Our PROTECT study has given us a unique opportunity to explore the relationship between cognitive performance and music in a large cohort of older adults. Overall, we think that being musical could be a way of harnessing the brain’s agility and resilience, known as cognitive reserve.
“Although more research is needed to investigate this relationship, our findings indicate that promoting musical education would be a valuable part of public health initiatives to promote a protective lifestyle for brain health, as would encouraging older adults to return to music in later life. There is considerable evidence for the benefit of music group activities for individuals with dementia, and this approach could be extended as part of a healthy ageing package for older adults to enable them to proactively reduce their risk and to promote brain health.”
Stuart Douglas, a 78-year-old accordion player from Cornwall, has played the instrument throughout his life and now plays with the Cober Valley Accordion Band as well as the Cornish Division of the Royal Scottish Country Dance Society.
He said: “I learnt to play the accordion as a boy living in a mining village in Fife and carried on throughout my career in the police force and beyond. These days I still play regularly, and playing in the band also keeps my calendar full, as we often perform in public. We regularly play at memory cafes so have seen the effect that our music has on people with memory loss, and as older musicians ourselves we have no doubt that continuing with music into older age has played an important role in keeping our brains healthy.”
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Research

Smart wristband developed to identify and manage atrial fibrillation

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It’s one of the most common conditions affecting those over 65 and left untreated can lead to stroke, blood clots in the veins and, in the most extreme cases, heart failure.

Atrial fibrillation currently affects more than 40 million people worldwide and the incidence and prevalence of the medical condition have increased three-fold in the past 50 years as populations age and survival rates for chronic diseases increase.

Now thought of as a global epidemic, 16 million people in the United States alone are projected to have been diagnosed with the ailment by 2050. In Europe, the figure among the over 55s is expected to reach 14 million by 2060.

It is estimated that by 2050, AF will be diagnosed in at least 72 million individuals in Asia.

One of the most common symptoms of AF is a pounding, fluttering, or quivering heartbeat, more commonly known as heart palpitations. Other signs include dizziness, fatigue, a fast heart rate of more than 100 beats per minute, breathlessness, and chest pain – many of the classic stress or anxiety signs that characterise a panic attack.

It’s one of the reasons that millions of people are walking around unaware that they are suffering from atrial fibrillation. How many times have you heard someone attribute their racing heartbeat to a caffeine-induced surge brought about by having drunk one too many coffees?

Many more are asymptomatic, meaning they are producing and showing no symptoms at all.

Often the condition will only be picked up when a patient undergoes a health check for an unrelated matter.

However, early detection and treatment of AF are paramount if later complications are to be avoided.

Without treatment, people with AF are up to five times more likely to suffer strokes, leading to the risk of severe disability and even premature death.

But new patient-safe monitoring technology to check and manage individual factors provoking atrial fibrillation, has been invented by Lithuanian researchers that could hold the key to earlier diagnosis and outcomes for the potentially serious heart condition.

A smart wrist-worn bracelet has been developed by Lithuanian scientists to identify atrial fibrillation. Credit: KTU

It involves patients wearing a so-called smart bracelet – already an accepted accessory for many – that uses an algorithm that can detect atrial fibrillation.

Traditional methods of diagnosing AF involve patients having to wear intrusive and uncomfortable sensors. But this new technology incorporates complementary sensors and a signal processing algorithm, with patients also being asked to input potential arrhythmia triggers on a mobile app.

The device is the result of a successful collaboration between the Kaunas University of Technology Biomedical Engineering Institute (KTU BMEI) and Vilnius University’s Santaros Clinics.

Researchers at KTU BMEI have been working in the field of atrial fibrillation monitoring technology development for more than a decade. It was several years ago that they developed the bracelet – the patent application for the device was submitted to the Lithuanian State Patent Bureau at the end of 2018 – which is aimed at older people, who can be especially self-conscious when using technologies and smart devices.

Professor Vaidotas Marozas, director of KTU BMEI, told Agetech World: “We are focusing on developing technologies which are needed for the public and contemporary medicine. For example, due to the prevalence of this condition (AF), every person older than 65 should be checked for atrial fibrillation.

“Non-invasive, compact wearable devices are an attractive solution for monitoring the health status of such high-risk groups.”

The disease usually starts with self-terminating so-called ‘paroxysmal episodes’ which, if recognised in time, can be treated by non-medication means.

These episodes may be different for each patient, however. For some, they may last for a short time and recur infrequently. For others, the episodes can be longer and more frequent.

But untreated AF will eventually develop into a persistent condition, which is more complicated to treat.

The smart wristband developed by Lithuanian scientists. Credit: KTU

The KTU-developed smart bracelet – which Lithuanian company, Teltonika, has stepped in to produce – has been used together with other devices in the TriggersAF project supported by the European Regional Development Fund.

The aim of the project coordinated by the Kaunas University of Technology in partnership with Vilnius University, is to develop and test methods that allow patients to identify their individual arrhythmia triggers via a wrist-wearing device.

It is already known that for some patients, atrial fibrillation episodes can be provoked by certain modifiable factors, such as alcohol, increased physical activity, stress, and sleep disturbance.

Identifying and avoiding individual factors would help determine non-pharmaceutical intervention methods to arrhythmia management.

As the project addresses a clinical problem, it has been important to have on board experienced clinicians who deal with AF daily. One of them is Justinas Bacevičius, a cardiologist at VU Hospital Santaros Clinics.

He said: “Although we see a wide variety of atrial fibrillation patients in our hospital, two types can be distinguished. The first group includes older, overweight, diabetic, hypertensive patients or those having sleep apnoea.

“The second group is the complete opposite – often they are young, professional sportspersons, businesspeople or performers who are experiencing a lot of stress.”

Mr Bacevičius said the data from the patients suggests a link between the onset of arrhythmia and sleep disorders.

He added that interestingly, even in patients who are not diagnosed with sleep apnoea, a correlation between snoring during sleep and the onset of atrial fibrillation in the morning, or later in the day, had been identified.

But with no objective methods to identify individual factors influencing the arrythmia in patients, KTU BMEI researchers in collaboration with cardiologists from VU Hospital Santara Clinics and their long-term partner Leif Sörnmo from Lund University in Sweden, have proposed one.

It assumes that arrythmia parameters, such as the relative duration of an episode, increase after an arrythmia-provoking factor.

Vilma Pluščiauskaitė, a PhD student at KTU and a junior researcher on the project, explained: “The essence of our proposed approach is that the patient uses a wearable bio signal-recording device for a set monitoring period, e.g. two weeks, and enters potential triggers for atrial fibrillation into a mobile app.

“For the next two weeks, the patient avoids the identified potential triggers, and the relation is assessed by an equation proposed by KTU BMEI researcher Dr Andrius Petrėnas.

“If a correlation between the influencing factor and the occurrence of arrhythmia is detected, the patient is advised to avoid the specific identified factor.”

The project’s database is the first of its kind in the world. It includes the recorded patients’ physiological signals, such as electrocardiogram and photoplethysmogram (a simple and low-cost technique that sends light pulses through the skin into the blood vessels to detect blood volume changes), and potential arrythmia provoking factors entered in a person’s mobile app.

The database collected by the researchers has allowed them to test the developed method and identify arrythmia-provoking factors in individual patients.

Professor Vaidotas Marozas. Credit: KTU

Project leader, Professor Marozas, is understandably delighted with its success, which will allow further development of the smart bracelet technology.

He said: “The database generated by the project is a unique result. We have managed to interest an international consortium funded by the European Metrology Association in this data. This consortium has invited us to join their new project as a partner and we will continue our work.”

The lack of technology currently available to individually identify arrythmia-provoking factors is probably due to the fact that monitoring has traditionally been inconvenient. Patients usually have to have an electrocardiogram (ECG), which is an electrical recording of their heart rhythm.

If that doesn’t identify a problem, then further monitoring will be needed, involving having to wear a portable ECG recording device for 24 hours or more.

Patients may also be required to fill in numerous questionnaires to pinpoint trigger factors, which can be subject to recall bias, where they either forget about a potential arrhythmia provoking stimulus or are reluctant to acknowledge the presence of certain influences, such as alcohol intake.

Mr Pluščiauskaitė said: “Certain influencing factors for arrythmia, such as increased exercise, stress, or sleep disturbances, can be identified from physiological signals by the dedicated algorithms. However, other influencing factors, such as alcohol consumption, are difficult to identify in the signals, so it is best if the patient has the opportunity to indicate when he or she consumed alcohol.”

He added that it is hoped that in the future, identifying these arrythmia triggers will only require a smart bracelet incorporating complementary sensors and signal processing algorithm.

 

 

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