Nearly half of all older adults now die with a diagnosis of dementia 

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Nearly half of all older adults now die with a diagnosis of dementia listed on their medical record, up 36% from two decades ago, a new study shows.

But that sharp rise may have more to do with better public awareness, more detailed medical records and Medicare billing practices than an actual rise in the condition, the researchers say.

Even so, they note, this offers a chance for more older adults to talk in advance with their families and health care providers about the kind of care they want at the end of life if they do develop Alzheimer’s disease or another form of cognitive decline.

The study, published in JAMA Health Forum by a University of Michigan team, uses data from 3.5 million people over the age of 67 who died between 2004 and 2017. It focuses on the bills their providers submitted to the traditional Medicare system in the last two years of the patients’ lives.

In 2004, about 35% of these end-of-life billing claims contained at least one mention of dementia, but by 2017 it had risen to more than 47%. Even when the researchers narrowed it down to the patients who had at least two medical claims mentioning dementia, 39% of the patients qualified, up from 25% in 2004.

The biggest jump in the percentage of people dying with a dementia diagnosis happened around the time Medicare allowed hospitals, hospices and doctors’ offices to list more diagnoses on their requests for payment.

But around this same time, the National Plan to Address Alzheimer’s Disease also went into effect, with a focus on public awareness, quality of care and more support for patients and their caregivers.

The end-of-life care that patients with dementia received changed somewhat overtime, including a drop in the percentage who died in a regular hospital bed or a ICU bed, or who had a feeding tube in their last six months. The percentage who received hospice services rose dramatically, from 36% to nearly 63%, though the authors note this is in line with a national trend toward more hospice care by the late 2010s.

“This shows we have far to go in addressing end-of-life care preferences proactively with those who are recently diagnosed, and their families,” said Julie Bynum, M.D., Ph.D., senior author of the study and a professor of geriatric medicine at Michigan Medicine. “Where once the concern may have been underdiagnosis, now we can focus on how we use dementia diagnosis rates in everything from national budget planning to adjusting how Medicare reimburses Medicare Advantage plans.”


What is dementia?

The term ‘dementia’, otherwise known as ‘major neuro- cognitive disorder’, is not one specific disease but rather a group of symptoms that happen because of a disease. It impacts memory, behaviour, thinking and social abilities severely enough to interfere with one’s activities of daily living and social autonomy. While Alzheimer’s  disease is the most common cause of dementia in people over the age of 65, it is not the only one. Most people over the age of 80 have more than one cause to account for their dementia, such as small strokes or Parkinson’s disease. In this report, we discuss differential diagnostic issues once the presence of dementia has been established by a clini- cal assessment supported by appropriate laboratory tests and brain imaging.

Many of the diseases that cause dementia exhibit similar symptoms, including memory loss, disorientation, con- frontational behaviour, language problems, and a variety of physical issues altering vision and mobility. For each disease, and each person affected, these symptoms can present in different ways.

Alzheimer’s disease: The distinguishing feature of Alzheimer’s disease is the presence of beta-amyloid and tau proteins that build up in the brain to the point that they obstruct normal cognitive functions. This usually manifests

with changes in memory, abstract thinking, judgement, behaviour, mood and emotions, and ultimately interferes with physical control over the body.

Vascular dementia: This is the second most common form of dementia. It occurs when the brain is deprived of vital nutrients and oxygen from the blood flowing through the brain. This can happen after one stroke in a strategic brain area, or a series of small strokes. Other factors that can contribute to the development of vascular demen- tia include a history of heart attack, irregular or unusually rapid heartbeat (atrial fibrillation), hardened arteries that restrict blood flow (atherosclerosis), high blood pressure, diabetes, high cholesterol, obesity and smoking.

Dementia with Lewy bodies: This type of dementia combines the cognitive impairments of Alzheimer’s dis- ease with the diminished motor skills associated with Parkinson’s disease. This can make diagnosis especially challenging. Dementia with Lewy bodies is character- ised by the presence of alpha-synuclein proteins that form clusters in brain cells. These invasive structures then interfere with normal brain functioning. While also encompassing the more common symptoms of demen- tia, dementia with Lewy bodies is differentiated by recurring visual hallucinations, fluctuations in attention

and alertness, and declining cognitive abilities such as problem solving, and increased visuospatial problems that make it difficult to interpret what is seen. Individ- uals with dementia with Lewy bodies may have more nocturnal sleep disturbance than people with Alzheim- er’s disease.

Frontotemporal dementia: The frontal and temporal cor- texes atrophy (shrink) as neurons in those parts of the brain die. Early signs of frontotemporal dementia usually include changes in speech, personality, behaviour, impulse con- trol, and coordination. Frontotemporal dementia tends to occur at a younger age.

Young-onset dementia: This rare form of dementia, accounting for approximately 3% of cases, may be caused by any of the above-described diseases, be it Alzheimer’s disease, vascular, Lewy bodies or frontotemporal demen- tia. The only difference is that it occurs in people under the age of 65. In many cases, there is a delay in obtaining an accurate diagnosis as dementia is often overlooked as a possibility in a younger person.

Although this report’s primary focus is dementia, we can, in some circumstances, diagnose conditions such as Alzheimer’s disease in its pre-dementia symptomatic stage, designated as mild cognitive impairment (MCI) and mild behaviour impairment (MBI) due to Alzheimer’s disease or prodromal Alzheimer’s disease. This diagnosis does however require laboratory-measured biomark- ers. These are not yet available for use in a primary care setting. This report provides an update about the cur- rent science and research relating to these biomarkers and Alzheimer’s Disease International will be monitoring their validity and use in the future. It should be noted that mild cognitive impairment may be reversible or non-pro- gressive over time and may be the best opportunity for secondary prevention against dementia.

reference link :Published by Alzheimer’s Disease International. September 2021


More information: Matthew A. Davis et al, Trends in US Medicare Decedents’ Diagnosis of Dementia From 2004 to 2017, JAMA Health Forum (2022). DOI: 10.1001/jamahealthforum.2022.0346

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