Study shows dementia care program delays nursing home admissions, cuts Medicare costs

Woman in nursing home

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News Release
December 2018 | UCLA – Study shows dementia care program delays nursing home admissions, cuts Medicare costs

 

New research shows that a comprehensive, coordinated care program for people with dementia and their caregivers significantly decreased the likelihood that the individuals would enter a nursing home. The study also shows that the program saved Medicare money and was cost-neutral after accounting for program costs.

The research, conducted at the UCLA Alzheimer’s and Dementia Care Program, was designed to evaluate the costs of administering the program, as well as the health care services used by program participants, including hospitalizations, emergency room visits, hospital readmissions and long-term nursing home placement.

“The findings of this study show that a health care system-based comprehensive dementia care program can keep persons with dementia in their homes and in the community without any additional cost to Medicare,” said the study’s senior author, Dr. David Reuben, Archstone Professor of Medicine and chief of the UCLA Division of Geriatrics at the David Geffen School of Medicine at UCLA.

The study was published Dec. 21 in JAMA Internal Medicine.

The research focused on the UCLA Alzheimer’s and Dementia Care Program. In the program, people with dementia and their caregivers meet with a nurse practitioner specializing in dementia care for a 90-minute in-person assessment and then receive a personalized dementia care plan that addresses the medical, mental health and social needs of both people. The nurse practitioners work collaboratively with the patient’s primary care provider and specialist physicians to implement the care plan, including adjustments as needs change over time. A total of 1,083 Medicare beneficiaries with dementia were enrolled in the program and were followed for three years. The study compared them to a similar group of patients living in the same ZIP codes who did not participate in the program.

“The most striking finding was that patients enrolled in the program reduced their risk of entering a nursing home by about 40 percent,” said lead author Dr. Lee Jennings, assistant professor at the University of Oklahoma College of Medicine. Jennings began the project while on faculty at the Geffen School and finished it after arriving at Oklahoma.

There were no differences between the two study groups in hospitalizations, emergency room visits or hospital readmissions. However, cost was another important element of the study. Participants in the program saved Medicare $601 per patient, per quarter, for a total of $2,404 a year. However, after program costs were factored in, the program was cost-neutral and might result in savings in other settings, such as at other health care systems. That was good news to the study’s authors.

“We found the study to be very exciting,” Jennings said, “because it showed that an intensive intervention can delay nursing home entry without adding costs. The intervention isn’t going to reverse dementia, but it allows us to provide high-quality care to help patients cope with the progression of this disease and stay in their homes for longer.”

Jennings added that individuals with dementia typically have not received good-quality care. “Part of the reason,” she said, “is that the care takes a significant amount of time, which primary care physicians don’t have in abundance. In addition, pharmacologic treatments for dementia are limited, which makes community resources all the more important for both patients and caregivers. However, community programs tend to be underutilized.”

The intervention featured in the study addresses those issues directly. The assessment looks not only at what the patient and caregiver need, but also at their strengths, such as financial security, family assistance and proximity to community resources. It is designed to be interdisciplinary and to address the needs of both patients and caregivers.

“This study aligns with similar studies of collaborative care models for other chronic diseases, such as heart failure,” Jennings said. “It underscores that we need to be thinking differently about how we provide care to persons with chronic illnesses, like dementia. This study shows the benefit of a collaborative care model, where nurse practitioners and physicians work together to provide comprehensive dementia care.”

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Beastie Boy John Berry died of frontal lobe dementia – but what is it?

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Jan Oyebode, University of Bradford

John Berry, a founder member of the Beastie Boys, has died of dementia at the age of 52. Berry’s father told Rolling Stone magazine that his son died from frontal lobe dementia, a rare form of dementia more properly referred to as fronto-temporal dementia.

Symptoms of fronto-temporal dementia usually begin in late middle age. Because the disease is not very well known, people with fronto-temporal dementia often have delays in receiving a diagnosis and may find the services they need are not available.

A tricky term

The terms used for this dementia are confusing. The changes in the brain are referred to as “fronto-temporal lobar degeneration”. These do not initially have any effect on people’s behaviour. Once signs and symptoms show up, it is possible to diagnose the condition as one of the “fronto-temporal dementias”.

When the frontal lobes – the parts of the brain lying immediately behind the forehead – are mainly affected, there are changes in behaviour or personality, resulting in “behavioural variant fronto-temporal dementia”. When the temporal lobes – parts of the brain near the temples – are mainly affected, dementia shows up through changes in language, of which there are two types: semantic dementia and progressive non-fluent aphasia. Whichever type of fronto-temporal dementia people have, they do not come to the doctor complaining of the sort of problems with memory loss that most of us think of as being signs of dementia.

We don’t know the specific symptoms that John Berry had as each case of fronto-temporal dementia is different, but about four to 15 people in every 100,000 have fronto-temporal dementias – and there are some common symptoms.

Losing the supervisor

There is huge variation in how fronto-temporal dementia progresses. But over time, it usually affects more and more aspects of thinking and functioning. It is a condition that shortens life, with people living about three to ten years after diagnosis.

So what happens during the earlier stages of behavioural variant fronto-temporal dementia – the type that is sited in the frontal lobes? One way of thinking of this area of the brain is to imagine it as the supervisor of complex activities and social behaviour. When the supervisor starts to do its job poorly, people develop trouble with complicated tasks. They may not be able to get started, so they may seem apathetic and lacking in energy. When they get started they may get stuck in a groove.

Fronto-temporal dementia is sometimes confused with depression.
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One carer we spoke with described how his brother would drive the car late into the night until it ran out of petrol even though he knew, on one level, that he ought to stop to fill up.

Sometimes people repeat an action over and over in exactly the same way, perhaps arranging objects very precisely or following a set daily routine according to a strict timetable. As the frontal lobe overseer loosens control, people often become uninhibited. They may become blunt and tactless. They may act on appetites and urges in ways that are quite out of character: touching people, swearing profusely when irritated and eating excessive amounts of sweet foods.

A particular difficulty for friends and family is that people with this dementia lose their ability to empathise. They may no longer offer comfort if someone is in tears and may seem very self-centred.

As not many people are familiar with the condition, it is often mistaken for other more common conditions. People may put the changes down to mid-life crisis, stress at work, depression or the menopause. It is possible that the condition is often misdiagnosed.

On average, it takes four years to diagnosis after symptom onset for younger people with dementia, twice as long as for those over 65 years of age, by which time, relationships may have broken down. People with fronto-temporal dementia are often at a stage of life where they still have children – and sometimes parents – who depend on them. So this, coupled with their increasing needs for support can be very stressful for everyone. Yet a recent national survey, currently in press, found there was a lack of provision of appropriate care across most of the country.

Biomedical research is making strides in identifying many of the proteins that accumulate as plaques in the brains of the people affected. The genetic aspects which affect about one in every five to ten cases are also now understood. However, with a cure still a long way off, research into how to support and assist people to manage their day-to-day lives is also very important. In our research we have taken detailed accounts of the experiences of those affected and we will be using these to develop and test ways of helping people and their families to manage and live better with the condition.The Conversation

Jan Oyebode, Professor of Dementia Care, University of Bradford

This article was originally published on The Conversation. Read the original article.

Is there really a benefit from getting an early dementia diagnosis?

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Tim Gomersall, University of Huddersfield

The Alzheimer’s Society recently issued a call for people with symptoms such as memory loss and confusion to seek early medical help. The British charity is worried that people may be putting off getting a dementia diagnosis and not receiving the health care and support they need. As the Alzheimer’s Society’s recent blog post put it: “A lack of diagnosis is denying many people with dementia the chance of getting the best possible treatment, information and support – evidence shows the earlier on you receive these, the better your chance of living well for longer.” But is early diagnosis always a good thing?

Early diagnosis has also been a key policy aim for government. We can see this in the National Dementia Strategy, and David Cameron’s Challenge on Dementia. A few years ago, the NHS even trialled a scheme to pay GPs £55 for each dementia diagnosis made. This move was widely condemned by doctors’ groups and quietly dropped after six months. In any event, the push for earlier diagnosis continues. So what exactly are the benefits of earlier diagnosis? And who are the beneficiaries?

What works?

There are no known treatments to prevent or reverse dementia, although drugs called memantine and acetylcholinesterase inhibitors can help to relieve symptoms .

In the course of my recent fieldwork, however, I met some people with memory loss who invested hope in these treatments beyond what was possible. They believed that getting onto anticholinesterase inhibitors as soon as possible could delay further decline.

Drugs can help with symptoms.
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One of the most difficult experiences in my recent research was meeting a woman who felt she had been denied treatment by the doctors, and asked me and my colleague if we were able to prescribe them for her. We had to explain that we were not clinically qualified, and in any case, the drugs would not prevent the progression of dementia. But false hope can translate into big profits for drugs companies.

The anticholinesterase inhibitor market had an estimated value of US$4.2 billion globally in 2011, with this figure set to increase over coming years as people live longer. One recent market analysis identified early diagnosis as “a challenge [that] will affect the growth of the market over the 2013-2023 forecast period”.

Thankfully, drug treatment is not the only option for people with dementia. Anyone with suspected dementia can access a memory clinic on the NHS to seek practical support for their needs. Memory clinics typically include a range of health professionals – including occupational therapists, psychologists, specialist nurses and psychiatrists. These multidisciplinary teams can help with emotional and occupational support. They can also offer advice on adapting homes – for instance, by providing memory aids, grab rails for bathing and toileting, and extra lighting.

The National Institute for Health and Care Excellence (NICE) also recommends “group cognitive stimulation programmes”. Cognitive stimulation uses enjoyable activities to engage thinking and memory – for example, musical activities, reminiscence sessions, and games. A recent review suggests this approach could help to maintain cognitive abilities, particularly memory and communication.

However, the current evidence relies on a number of small trials of often quite different activities, going back to 1979. Nevertheless, in the absence of effective drug treatments, cognitive stimulation is important for many people with dementia, and continues to attract research and practice interest.

Finally, we shouldn’t underestimate the psychological importance of receiving a diagnosis. Overall, the evidence shows a mixed picture. On the one hand, people are glad to understand the cause of their symptoms, to be able to plan for the future, and access resources such as dementia support groups. However, people often worry about the stigma of dementia, and some want to avoid the emotional impact of the diagnosis.

Is earlier better?

Over the last couple of years, I’ve been involved in a project looking at people’s experiences of mild cognitive impairment. This syndrome is defined as a “boundary state” between cognitive ageing (a normal process) and dementia.

If the Alzheimer’s Society’s suggestion that dementia is being under-diagnosed holds, then people with mild cognitive impairment are an anomaly. They have sought medical advice for possible dementia symptoms which are not severe enough for a diagnosis. Might it be that more people are already seeking help earlier, as the Alzheimer’s Society hopes? It seems plausible.

After the National Dementia Strategy was launched, there was a 12% increase in dementia diagnosis rates in the UK between 2009 and 2011, and recent studies show a continued upward trend.

So, who benefits from early diagnosis? As suggested above, a number of commercial and charitable organisations stand to gain substantially. There are also some benefits that may accrue to people with dementia from an early diagnosis in terms of symptom control and cognitive stimulation. Though any potential gains are small, these can still be meaningful to the person.

The other side of this, however, is the risk of over-diagnosis and increased public health anxiety associated with such “public awareness” campaigns. For example, our recent review of mild cognitive impairment research suggests people with this diagnosis live with significant uncertainty about the cause of their problems.

These patients often continue to worry about possible dementia, and the infrastructure for supporting them is patchy at best. The ethics of diagnosing people who may have no underlying illness has also been questioned. So yes, we should be helping people with dementia to get the support they need as soon as possible. But this shouldn’t come at the cost of over-diagnosing and over-medicating people.The Conversation

Tim Gomersall, Senior Lecturer in Psychology, University of Huddersfield

This article was originally published on The Conversation. Read the original article.

Singapore’s Dementia Friendly Community: Forget Us Not

Singapore has a Dementia Friendly Community in Yishun, this is a joint awareness initiative by Lien Foundation and Khoo Teck Puat Hospital. The campaign is known as  “Forget Us Not” the campaign. The website is available in both English and Chinese. A good resource for all Asians to check out to gain some basic knowledge about dementia.

For people overseas this may be a good resource if you are working with an Asian client or for people living in Asia, this may be a good resource to share with your clients to have them understand more about dementia. It’s simple and easy, with short write-ups and visuals to help bring the message across.

Visit their website: Forget Us Not – Home