In the first study to rigorously describe the clinical course of advanced dementia, a leading cause of death among Americans, researchers in the US concluded that dementia is a terminal illness and is insufficiently recognized as such, resulting in many patients not receiving the palliative care that aims to improve the comfort of the terminally ill.

The study was the work of lead author Dr Susan L Mitchell and colleagues and is published online in the 15 October issue of the New England Journal of Medicine, NEJM. Mitchell a senior scientist at the Institute for Aging Research of Hebrew SeniorLife, an affiliate of Harvard Medical School in Boston, Massachusetts, where she is also Associate Professor of Medicine.

Today there are more than 5 million Americans living with dementia, and this number is expected to treble over the next 40 years, with worldwide numbers rising to more than 35 million by 2050, according to a recent study by Alzheimer’s Disease International.

People with dementia, of which the most common form is Alzheimer’s disease, have trouble with daily living: they suffer from memory loss, find it difficult to communicate, their personality changes, and they can’t reason or make decisions.

Mitchell told the press that:

“Dementia is a terminal illness; as the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer.”

Previous studies have already suggested that advanced dementia patients are under-recognized as being at high risk of death and receive insufficient palliative care, which aims to improve the comfort of the terminally ill. However, the authors wrote that the clinical course of advanced dementia in nursing home residents has not been well described.

Mitchell and colleagues examined deaths among advanced dementia patients residing in nursing homes. More than half of them died in 6 months and symptoms that frequently preceded death included pneumonia, fevers and eating problems.

They hope their findings stress the need to improve the quality of end of life care in nursing homes to relieve the suffering of patients with advanced dementia and improve communication with their family members.

“This will help to ensure that patients and families understand what to expect in advanced dementia, so that appropriate advance care plans can be made,” said Mitchell.

For the Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study, which was funded by the National Institutes of Health, the researchers followed the clinical course of 323 residents with advanced dementia being cared for in 22 Boston-area nursing homes for up to 18 months.

During the final stage of their dementia, the patients’ memory deficits were so profound they could no longer recognize close family members, spoke fewer than six words, were incontinent and could not walk around.

177 of the patients died during the course of the study. The results showed that the most common complications, which were associated with high six-month mortality rates, were pneumonia, febrile episodes and eating problems.

Other symptoms were also common and increased as patients approached the end of their lives. These were uncomfortable and included pain, pressure ulcers, shortness of breath and aspiration.

Mitchell and colleagues also found that while 96 per cent of the patients’ healthcare proxies (the individuals legally empowered to make healthcare decisions on behalf of the patients) believed that comfort was the primary goal of care for their loved one, nearly 41 per cent of the patients who died during the study received at least one medical intervention during the last three months of life.

The interventions included being admitted to hospital, being taken to an emergency room, having intravenous therapy and tube feeding.

However, the researchers also found that patients whose healthcare proxies appeared to understand the clinical course of their loved one’s advanced dementia were less likely to undergo aggressive interventions towards the end of their lives.

At the start of the study, 81 per cent of the proxies said they thought they understood which clinical complications to expect, but only one third said that a doctor had counseled them about it.

Mitchell said that:

“Many of the patients in our study underwent interventions of questionable benefit in the last three months of life.”

“However, when their healthcare proxies were aware of the poor prognosis and expected clinical complications in advanced dementia, patients were less likely to undergo these interventions and more likely to receive palliative care in their final days of life,” she explained.

In conclusion, Mitchell said that a critical step in improving the care of patients with end-stage dementia is to have a understanding of the clinical course of the final stages of the disease.

“This knowledge will help to give healthcare providers, patients and families more realistic expectations about what they will confront as the disease progresses and the end of life approaches,” she added.

In an accompanying editorial in the same issue of the journal, geriatrician and medical ethicist Dr Greg A Sachs of the Indiana University Center for Aging Research, noted that end-of-life care for most older people with dementia has not changed in decades and urged that these patients receive more palliative care to help manage their pain and other symptoms.

Sachs said this new study by Mitchell and colleagues:

“Moves the field forward in major ways with regard to both prognosis and the terminal nature of advanced dementia.”

Sachs said that more research like this is needed to update public policy and get lawmakers and insurers to see the need to increase support and heathcare for older people who can no longer speak for themselves.

“Since individuals with advanced dementia cannot report their symptoms, these symptoms often are untreated, leaving them vulnerable to pain, difficulty breathing and various other conditions,” said Sachs.

We shouldn’t allow these people to suffer,” he added, and urged that we provide instead “palliative care to make them more comfortable in the time they have left”.

Sachs acknowledged that it is not easy to pick up nonverbal clues of pain, but urged caregivers and medical staff to look out for them. Examples include noticing the patient holding the body in a certain way to avoid being in a painful position, spotting signs of swollen or tender joints. A caregiver reporting these symptoms, or a doctor noticing them during a medical exam, could make a significant difference to the patient’s comfort and may also help spot underlying conditions, he said.

Sachs explained that palliative care is a team effort that manages pain and medical treatment, and it gives patients emotional support that meets their needs. He pointed out that while hospices provide palliative care, which focuses on relieving symptoms like pain, shortness of breath, fatigue, nausea, difficulty sleeping and loss of appetite, it can also be administered in other settings regardless of prognosis along with medical treatment. It does not hasten death, he stressed.

“The Clinical Course of Advanced Dementia.”
Mitchell, Susan L., Teno, Joan M., Kiely, Dan K., Shaffer, Michele L., Jones, Richard N., Prigerson, Holly G., Volicer, Ladislav, Givens, Jane L., Hamel, Mary Beth
N Engl J Med 2009, Volume 361, Number 16, pp 1529-1538
Published online 15 October 2009

“Dying from Dementia.”
Sachs, Greg A.
N Engl J Med 2009, Volume 361, Number 16, pp 1595-1596.
Published online 15 October 2009

Additional sources: Hebrew SeniorLife Institute for Aging Research, Indiana University School of Medicine.

Written by: Catharine Paddock, PhD