Caregivers and their relatives disagree about care given, received

ScienceDaily (Aug. 1, 2011) — Caregivers and their relatives who suffer from mild to moderate dementia often have different perceptions regarding the amount and quality of care given and received. A study by researchers at Penn State and the Benjamin Rose Institute on Aging examined a major source of those differences -- caregivers do not understand the things that are important to their relatives with dementia.

"Family caregivers often become the surrogate decision makers of relatives who have dementia, so the two groups need to communicate well and to understand each other," said Steven Zarit, a professor and head of the Department of Human Development and Family Studies at Penn State and the study's leader. "Unfortunately, in our study we found that family caregivers and their relatives often do not understand each other well when it comes to the values they hold about giving and receiving care."

The team interviewed 266 pairs of people, each composed of an individual with mild to moderate dementia and his or her family caregiver. To participate in the study, caregivers had to be the primary family caregiver of the dementia patient and the dementia patient had to be living in his or her own home. The researchers interviewed members of the pairs separately, asking questions related to how much value they place on five core values: autonomy, burden, control, family and safety. For example, one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants.

"Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values," said Zarit. "For example, the person with dementia might think it is very important to continue to be part of family celebrations, but his or her caregiver might not." The team's results will appear in the August issue of The Gerontologist.

According to Zarit, a major reason for differences in these perceptions is that caregivers come to view people with dementia as unable to make their own decisions about daily life. "That is something that does happen as the disease progresses, but the people in our study remained capable of making decisions for themselves and could express their values in a clear and direct way," said Zarit. "Caregivers who still saw the person with dementia as able to direct his or her daily life were also more in tune with that person's values and beliefs."

This lack of agreement about how care is provided has ominous implications for when the dementia worsens. "As people's cognitive abilities decline," Zarit said, "they can no longer express clearly what they want. Family members have to act as surrogate decision makers, but if they don't understand the dementia patients' preferences about care, they may not be able to make the best choices."

Zarit plans to continue this research by developing and evaluating protocols for improving communication between caregivers and their relatives to ensure that medical and social decisions are made in such a way that reflect dementia patients' actual values.

This work was supported by the Administration on Aging, the Robert Wood Johnson Foundation, the AARP Andrus Foundation, the Retirement Research Foundation, the National Institute of Aging and the National Institute of Mental Health. Other authors on the paper include Allison Reamy and Kyungmin Kim, both graduate students in human development and family studies at Penn State, and Carol Whitlatch of the Benjamin Rose Institute on Aging.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Penn State, via EurekAlert!, a service of AAAS.

Journal Reference:

A. M. Reamy, K. Kim, S. H. Zarit, C. J. Whitlatch. Understanding Discrepancy in Perceptions of Values: Individuals With Mild to Moderate Dementia and Their Family Caregivers. The Gerontologist, 2011; 51 (4): 473 DOI: 10.1093/geront/gnr010

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Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its staff.

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E-cigarette or drug delivery device? Questions about safety, usage and future implications of new nicotine delivery products

ScienceDaily (July 21, 2011) — Devices marketed as "electronic cigarettes" are in reality crude drug delivery systems for refined nicotine, posing unknown risks with little new benefits to smokers, according to tobacco control experts.

In a "Perspective" published in the New England Journal of Medicine, researchers from the Legacy's Steven A. Schroeder National Institute for Tobacco Research and Policy Studies explore the current regulatory climate around electronic cigarettes ("e-cigarettes") and their safety. The authors, Nathan K. Cobb, MD, a pulmonologist and assistant professor at Georgetown University Medical Center, and David B. Abrams, PhD, executive director of the Schroeder Institute, also question future implications for physicians, policy makers and e-cigarette users.

E-cigarettes are constructed to mimic real cigarettes in size and appearance, but contain no tobacco and are not cigarettes at all. In reality they are delivery devices for refined nicotine, having more in common with inhalers used to treat asthma or other delivery devices for both approved and illicit drugs. Though individual brands vary in construction, the products generally produce a propylene glycol mist containing nicotine along with flavorings and other chemicals.

Currently, three interrelated products are being sold: the delivery device itself; cartridges that can contain up to 20 mg of nicotine; and refill kits that allow consumers to fill used cartridges with replacement nicotine solution. Some refill bottles, easily obtained over the Internet, contain enough nicotine to kill an adult if accidentally ingested.

The U.S. Food and Drug Administration (FDA) announced April 25, 2011, that it would regulate e-cigarettes as "tobacco products" and not as "drug-delivery devices." That action came after federal courts blocked the agency from regulating the products as drug-delivery devices. The courts maintained that, under the 2009 Family Smoking Prevention and Tobacco Control Act (FSPTCA), the FDA must regulate as tobacco products any product that contains nicotine from tobacco and that makes no claims to be therapeutic. These decisions together, the authors note, "upend[ed] the status quo" by having the effect of allowing the sale of unregulated refined nicotine directly to consumers, unless and until the FDA takes further action.

"The court's decision that e-cigarettes should be regulated as tobacco products and not as drug-delivery devices has substantially delayed the FDA regulatory process that normally protects the public health. It has the practical effect of allowing manufacturers to sell potentially dangerous refined nicotine products directly to consumers," said Cobb. "It is entirely possible that future modifications to the products will improve the efficiency of nicotine delivery and could dramatically increase the risks of addiction, abuse and serious overdose."

While most devices and nicotine fluids are produced by small manufacturers, Cobb and Abrams note that the fact that leading cigarette manufacturers Philip Morris International and British American Tobacco recently purchased sophisticated nicotine inhaler technologies may be an indication that both companies are developing next generation nicotine delivery devices of their own.

Abrams, a professor at Johns Hopkins Bloomberg School of Public Health added "Any refined nicotine product, whether used for smoking cessation and tested and approved by the FDA (like the Nicotrol inhaler) or a new product designed for 'reduced or modified' risk, can and must be tested and strictly regulated before being introduced to the market."

The authors argue that a comprehensive approach to regulating products containing refined nicotine is needed to protect the public's health and should involve Congress, the courts and the FDA.

In this piece, Cobb and Abrams discuss several safety concerns:

Testing of cartridges reveals poor quality control, variability in nicotine content among brands, and deviations between label claims and cartridge content.The devices do not reliably deliver nicotine, and have not been sufficiently evaluated in scientific studies the way the FDA requires of other drugs and devices used for smoking cessation. Smokers attempting to use e-cigarettes as quitting aids will most likely find them ineffective due to the fluctuating nicotine content and unpredictable delivery.Manufacturers sell cartridges with a range of up to 20 milligrams of nicotine. However, refill kits allow consumers to fill used cartridges with replacement solutions at much higher doses. In fact, the devices are not limited to delivering nicotine. The paper notes that instructions for filling cartridges with marijuana hash oil can be easily accessed on the Internet.The safety of inhaling propylene glycol over an extended period of time has not been studied in humans.E-cigarettes may serve as a "bridge product" that smokers use in places where traditional tobacco smoking is prohibited, thus perpetuating their addiction and use of real cigarettes. Additionally, they may be used as a 'starter' product for young people considering smoking, especially since the cartridges can be purchased over the Internet with tempting flavoring like grape and chocolate.

In their conclusion, Cobb and Abrams counter the argument made by e-cigarette advocates that taking the devices off the market could mean current users would be forced to return to traditional tobacco products. Instead, the two researchers point to the multiple pharmaceutical-grade nicotine products on the market that have been regulated, approved and deemed safe and effective by the FDA, including patches, gums, lozenges, nasal sprays and even an FDA-approved inhaler. The two researchers also state that current users should pursue research-proven effective cessation tools, such as nicotine replacement products, telephone quit lines, and Web-based cessation services, as well as non-nicotine pharmacotherapies like bupropion and varenicline.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Georgetown University Medical Center, via EurekAlert!, a service of AAAS.

Journal Reference:

Nathan K. Cobb, David B. Abrams. E-Cigarette or Drug-Delivery Device? Regulating Novel Nicotine Products. New England Journal of Medicine, 2011; 365 (3): 193 DOI: 10.1056/NEJMp1105249

Note: If no author is given, the source is cited instead.

Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its staff.

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