Setting Personal Goals for Dementia Care

Journal of the American Geriatrics Society Research Summary

Dementia is a health condition that affects your memory in ways that can make it difficult to carry out your usual daily tasks. The most common cause of dementia is Alzheimer’s disease, which causes abnormal changes that kill brain cells. However, there are many other types of dementia. Overall, dementia is a long-term illness, and most people live from four to 10 years after being diagnosed.

When you are first diagnosed with dementia, your goals may be to preserve your ability to perform your daily activities. But as the disease progresses, your goals may shift and your preferences for your care may shift with them. Eventually, you may wish to make sure that your preferences and expectations are known, particularly for end-of-life care. You may also want to be sure those wishes can be put into action by those who might make decisions for you when you don’t feel comfortable or are no longer able to make them on your own.

Healthcare providers can use a tool called “goal attainment scaling” (GAS) to help you set your personal health goals and measure whether you’re meeting them. Researchers have been using GAS for decades to measure the effects of mental health and rehabilitation efforts.

In a new study, researchers used GAS when caring for people with dementia to learn more about these individuals’ personalized goals for care. Their study was published in the Journal of the American Geriatrics Society. Continue reading

New Study Estimates the Caregiving Costs for Families

Journal of the American Geriatrics Society Research Summary

“Informal care” is the term used in medicine to describe unpaid care provided by family and friends. It’s an important lifeline for millions of older adults in the U.S. who need day-to-day help with shopping, cooking, cleaning, eating, taking medicine, looking after their own daily well-being, and many other activities essential to our health and quality of life as we age.

In the U.S., more than 35 million people provided informal care to someone 50-years-old and older in 2015. We usually understand the costs associated with a doctor, nurse, or other healthcare worker providing professional care to older adults. However, we don’t understand what the true costs are when older adults are cared for by family members or friends. In part, that’s because most studies have focused on “direct” healthcare costs (the expenses associated with professional help/treatment). However, these studies have ignored the “indirect” costs associated with informal care.

When the costs of informal care are accounted for, most studies usually multiply the hours of informal care by the wage that a formal home healthcare provider would earn. But this doesn’t reflect the true cost of informal care. Informal caregivers often give up other activities such as leisure or employment, for example. Studies haven’t examined the value of leisure time and the other important aspects of life people may give up when they care for a friend or family member.

In a new study, researchers focused on one of the most common caregiving arrangements: daughters between the ages of 40 and 70 who were likely to need to provide informal care to their mothers at some point in the near future. Participants were identified using the Health and Retirement Study, a survey conducted by the University of Michigan since 1992. Findings from this new analysis were published in the Journal of the American Geriatrics Society.

Continue reading

Managing Multiple Health Conditions: What Care Recipients and Caregivers Want Each Other to Know

Journal of the American Geriatrics Society Research Summary

In the United States, four out of five older adults have multiple chronic health conditions. Many of these people rely on the active support of a family caregiver to help manage their conditions.

Studies of older adults with dementia and their caregivers have shown that very often, the older adult’s desire to be self-sufficient often clashes with the caregiver’s concerns about the individual’s safety. However, researchers have also identified areas of friction among older adults who do not have dementia and their caregivers.

For example, according to one study among older adults who have severe heart disease, these individuals don’t appreciate unwanted or excessive phone contact—or advice they haven’t requested—from family and friends. In another study, older adults with lupus (an autoimmune disease caused when your immune system attacks your own body tissue) said they’d received advice from friends and family that they felt wasn’t well-informed. They also reported they received support that felt “overprotective.”

Noting that we need more understanding of caregiver and care recipient relationships, a research team designed a study using interviews with caregivers and the older adults receiving care. These interviews were designed to explore experiences, attitudes, and preferences about caregiving relationships. The study appeared in the Journal of the American Geriatrics Society. Continue reading

Caregivers Can Help Assess Whether Older Adults are Dealing with Delirium

Journal of the American Geriatrics Society Research Summary

Delirium is a sudden change in mental status that often occurs when older adults are in the hospital or after they have surgery. More than 20 percent of older adults may experience delirium.  The condition can lead to longer hospital stays, the need to be placed on a respirator (a machine that helps you breathe), long-term changes in your cognitive (mental) health, physical disability, and even death.

Acute illness (illnesses that happen suddenly, as opposed to chronic conditions that you live with over a longer period of time), surgery, and medications can contribute to delirium. In addition, disrupting regular routines may trigger sudden confusion or changes in behavior for certain people.

When healthcare professionals don’t recognize or diagnose delirium, it can delay an older person’s recovery.  Prolonged delirium can have a lasting impact on health and well-being. What’s more, delirium is distressing for caregivers—the family or friends involved in caring for an older adult. In hospitals, healthcare professionals screen (“test”) for delirium. However, despite routine screening, more than 60 percent of older adults with delirium are not diagnosed in hospitals. Continue reading

Home-Based Activity Program Reduces Severity and Frequency of Behavioral Symptoms and Maintains Function for Older Veterans with Dementia

JAGS graphicJournal of the American Geriatrics Society Research Summary

People with dementia often have behavioral symptoms. These include problems with memory, language, and decision-making abilities. People with dementia can also experience changes in mood, such as increased irritability, depression, and anxiety. They often need assistance with their daily activities, such as feeding, dressing, using the toilet, and bathing themselves. These symptoms are often troubling for people with dementia, as well as for their caregivers.

These dementia symptoms can reduce quality of life for people as they age. This can make them dependent on other people, which can lead to caregivers feeling distressed. It may also lead to people with dementia being hospitalized or placed in a nursing home, even if it is not what they would prefer for their care.

There are no effective drug treatments for dementia or its symptoms. Therefore, researchers have been exploring treatment options to improve symptoms that don’t involve using medication. A team of researchers studied one of those programs, called the Tailored Activity Program (TAP). TAP matches activities to the interests and abilities of people with dementia. Then it teaches caregivers how to use those activities daily.

The researchers initially reported positive results in a small study of 60 people. They then studied TAP in a larger group of veterans living with dementia. They reported their results in the Journal of the American Geriatrics Society. Continue reading