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

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

Study Examines Caregiving by Family Members, Other Unpaid Individuals

JAGS graphicJournal of the American Geriatrics Society Research Summary

It’s estimated that nearly 30 percent of the 38.2 million people aged 65 or older in this country receive some form of caregiving, either for health reasons or to help manage daily activities. More than 65 percent of these older individuals rely on family members, friends, and even neighbors for assistance with things like preparing meals, bathing, taking medications, and getting transportation.

Caregiving is a significant public health topic because it affects the health and well-being of both the older adult and his or her caregivers. Recently, a team of researchers examined the various characteristics of people who serve as unpaid caregivers. They also estimated how many people serve in this capacity. The researchers took note of the health-related tasks the caregivers provided, as well as how caregiving affected care providers. The researchers published their findings in the Journal of the American Geriatrics Society. Continue reading

The Financial Costs of Family Caregiving: A Stark Reality

200-lynn-friss-feinberg-aarp.imgcache.rev1320086023339-1Lynn Friss Feinberg, MSW
Senior Strategic Policy Advisor
AARP Public Policy Institute

(This post was originally published on the AARP blog and is re-posted with permission.)

Families and close friends are the most important source of support to older people and adults with a chronic, disabling, or serious health condition. They already take personal responsibility for providing increasingly complex care to the tune of $470 billion (as of 2013). That figure, representing family caregivers’ unpaid contribution in dollars, roughly equals the combined sales of the four largest U.S. tech companies (Apple, IBM, Hewlett Packard and Microsoft, $469 billion) in 2013.

The out-of-pocket hit

Caregiving families feel great uncertainty and high anxiety about how they will continue to pay for long-term services and supports (LTSS) for a relative or close friend with increasing self-care needs. And for good reason. Family caregivers not only provide help with daily activities and carry out complex medical and nursing tasks, they also spend a considerable amount of money out of pocket for caregiving.

Out-of-pocket spending for caregiving generally refers to the purchase of goods and services on behalf of the person the family caregiver is helping. This can include housing, medical and medication premiums, copays, meals, transportation, mobility and other assistive devices, supportive services (such as adult day services and paid home care), and other goods and services.

A recent AARP research study finds that more than 3 in 4 family caregivers (78 percent) report incurring out-of-pocket costs as a result of caregiving. In 2016, family caregivers of adults on average spent nearly $7,000 on out-of-pocket costs related to caregiving, amounting to 20 percent of their total income. Among racial or ethnic groups, out-of-pocket spending for caregiving was highest among Hispanic/Latino family caregivers. They spent an average of $9,022, representing 44 percent of their total income in 2016.

Caregiving, therefore, can have a major impact on one’s current and future financial situation. A consensus report from the National Academies of Sciences, Engineering, and Medicine concludes that family caregiving for older adults poses substantial financial risks for some family caregivers. Especially vulnerable to financial harm are families caring for older relatives with significant physical impairments or dementia, low-income family caregivers, and those who live with or live far away from their older relative who needs care. Continue reading