Illinois Cognitive Resources Network

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Fostering Alzheimer’s Brain Donation Among African Americans

Increasing African-American participation in medical research is challenging for a number of understandable and well-documented reasons. In part, many African Americans may mistrust medical research and the medical establishment based on past abuses, such as the infamous Tuskegee Syphilis Study. However, several NIA-supported Alzheimer’s Disease Center (ADC) researchers, in collaboration with members of their local African-American communities, are developing straightforward but highly effective ways to overcome barriers to clinical trial recruitment and post mortem brain donation.

The need to overcome this lagging participation is vital in light of research indicating older African Americans may be at greater risk for developing Alzheimer’s dementia than other groups in the United States, according to Dr. Carl V. Hill, director of the NIA Office of Special Populations.

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Workshop on Improving Models for Brain Aging and Alzheimer’s disease

Building better models of brain aging and Alzheimer’s disease

Amanda DiBattista, Program Director, Division of Neuroscience

Every moment counts in the pursuit of effective preventions and treatments for age-associated diseases affecting the brain. Capturing the essence of how aging and dementias such as Alzheimer’s disease affect the brain without the need to wait for aging to take place in real time has been a longstanding obstacle for researchers. 

Join us as we tackle the challenge of building better lab and computer models of brain aging and dementias during a virtual workshop April 27 and 28! Read the full blog post.

Download Today: Physical Activity Guidelines for Americans

We now know about more health benefits from physical activity — and how Americans can more easily achieve them. The second edition of the Physical Activity Guidelines for Americans is based on the latest scientific evidence that shows that physical activity has many health benefits independent of other healthy behaviors, like good nutrition.

The recommended amount of physical activity for adults is the same. To attain the most health benefits from physical activity, adults need at least 150 to 300 minutes of moderate-intensity aerobic activity, like brisk walking or fast dancing, each week. Adults also need muscle-strengthening activity, like lifting weights or doing push-ups, at least 2 days each week.

Download the complete second edition of the Physical Activity Guidelines [PDF – 14.2 MB].

Advance Care Planning: Health Care Directives

Older person writing down health care directives

Advance care planning is not just about old age. At any age, a medical crisis could leave you too ill to make your own health care decisions. Even if you are not sick now, planning for health care in the future is an important step toward making sure you get the medical care you would want, if you are unable to speak for yourself and doctors and family members are making the decisions for you.

Many Americans face questions about medical treatment but may not be capable of making those decisions, for example, in an emergency or at the end of life. This article will explain the types of decisions that may need to be made in such cases and questions you can think about now so you’re prepared later. It can help you think about who you would want to make decisions for you if you can’t make them yourself. It will also discuss ways you can share your wishes with others. Knowing who you want to make decisions on your behalf and how you would decide might take some of the burden off family and friends.

What Is Advance Care Planning?

Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know—both your family and your health care providers—about your preferences. These preferences are often put into an advance directive, a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury—no matter how old you are. It helps others know what type of medical care you want.

An advance directive also allows you to express your values and desires related to end-of-life care. You might think of it as a living document—one that you can adjust as your situation changes because of new information or a change in your health.

Gene Variant Linked to Higher Risk of Alzheimer’s in African Americans

A variant of a gene involved in cholesterol and lipid production is associated with significantly higher risk of late-onset Alzheimer’s disease in African Americans than in non-Hispanic whites of European ancestry, a recent study found. Although preliminary, the findings suggest that the two racial groups may have different genetic risk profiles for the most common form of Alzheimer’s dementia. The research is published in the April 10, 2013, issue of the Journal of the American Medical Association.

A person’s genes, along with age and environmental factors, are thought to play a role in the development of late-onset Alzheimer’s disease, which begins after age 60. Most previous studies of genes and Alzheimer’s disease have involved whites of European ancestry. However, studies on the rates of Alzheimer’s report that African Americans have a higher incidence of the disease than whites.

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How to Help a Parent Who Is the Primary Caregiver

A primary caregiver—especially a spouse—may be hesitant to ask for help or a break. Be sure to acknowledge how important the caregiver has been for the care recipient. Also, discuss the physical and emotional effects caregiving can have on people. Although caregiving can be satisfying, it also can be very hard work.

Offer to arrange for respite care. Respite care will give your parent a break from caregiving responsibilities. It can be arranged for just an afternoon or for several days. Care can be provided in the family home, through an adult day services program, or at a skilled nursing facility.

The ARCH National Respite Locator Service can help you find services in your parents’ community. You might suggest contacting the Well Spouse Association. It offers support to the wives, husbands, and partners of chronically ill or disabled people and has a nationwide listing of local support groups.

Your parents may need more help from home-based care to continue to live in their own home. Some people find it hard to have paid caregivers in the house, but most also say that the assistance is invaluable. If the primary caregiver is reluctant, point out that with an in-home aide, she may have more energy to devote to caregiving and some time for herself. Suggest she try it for a short time, and then decide.

In time, the person receiving care may have to move to assisted living or a nursing home. If that happens, the primary caregiver will need your support. You can help select a facility. The primary caregiver may need help adjusting to the person’s absence or to living alone at home. Just listening may not sound like much help, but often it is.

For More Information About Caregiving

National Respite Locator Service
www.archrespite.org/respitelocator

Well Spouse Association
800-838-0879
info@wellspouse.org
www.wellspouse.org

Caregiver Action Network
202-454-3970
info@caregiveraction.org
www.caregiveraction.org

Eldercare Locator
800-677-1116
eldercarelocator@n4a.org 
https://eldercare.acl.gov

Family Caregiver Alliance
800-445-8106
info@caregiver.org
www.caregiver.org

How to Support a Local Caregiver from Far Away

A spouse or the sibling who lives closest to an aging parent often becomes the primary caregiver. Long-distance caregivers can help by providing emotional support and occasional respite to the primary caregiver. Ask the primary caregiver what you can do to help. Staying in contact with your parents by phone or email might also take some pressure off your parent or sibling. Just listening may not sound like much help, but often it is.

Long-distance caregivers can also play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating care in an assisted living facility or nursing home (also known as a skilled nursing facility).

Long-distance caregivers may find they can be helpful by handling things online—for example, researching health problems or medicines, paying bills, or keeping family and friends updated. Some long-distance caregivers help a parent pay for care; others step in to manage finances.

How to Share Caregiving Responsibilities with Family Members

Caring for an older family member often requires teamwork. While one sibling might be local and take on most of the everyday caregiving responsibilities, a long-distance caregiver can also have an important role.

As a long-distance caregiver, you can provide important respite to the primary caregiver and support to the aging family member.

Talk About Caregiving Responsibilities

Indian man with his 2 children and 2 grandchildren

First, try to define the caregiving responsibilities. You could start by setting up a family meeting and, if it makes sense, include the care recipient in the discussion. This is best done when there is not an emergency. A calm conversation about what kind of care is wanted and needed now, and what might be needed in the future, can help avoid a lot of confusion.

Decide who will be responsible for which tasks. Many families find the best first step is to name a primary caregiver, even if one is not needed immediately. That way the primary caregiver can step in if there is a crisis.

Agree in advance how each of your efforts can complement one another so that you can be an effective team. Ideally, each of you will be able to take on tasks best suited to your skills or interests.

Consider Your Strengths When Sharing Caregiving Responsibilities

When thinking about who should be responsible for what, start with your strengths. Consider what you are particularly good at and how those skills might help in the current situation:

  • Are you good at finding information, keeping people up-to-date on changing conditions, and offering cheer, whether on the phone or with a computer?
  • Are you good at supervising and leading others?
  • Are you comfortable speaking with medical staff and interpreting what they say to others?
  • Is your strongest suit doing the numbers—paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?
  • Are you the one in the family who can fix anything, while no one else knows the difference between pliers and a wrench?

Consider Your Limits When Sharing Caregiving Responsibilities

When thinking about who should be responsible for what, consider your limits. Ask yourself the following:

  • How often, both mentally and financially, can you afford to travel?
  • Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent—taking care of your parent instead of your parent taking care of you? Can you continue to respect your parent’s independence?
  • Can you be both calm and assertive when communicating from a distance?
  • How will your decision to take on caregiving responsibilities affect your work and home life?

Be realistic about how much you can do and what you are willing to do. Think about your schedule and how it might be adapted to give respite to a primary caregiver. For example, you might try to coordinate holiday and vacation times. Remember that over time, responsibilities may need to be revised to reflect changes in the situation, your care recipient’s needs, and each family member’s abilities and limitations.

Studying Climate Change’s Impact on Older Adults

Emerald Nguyen, Social and Behavioral Science Administrator, Division of Behavioral and Social Research

As our nation observes Earth Day this week, NIA recognizes that far too many people continue to struggle due to climate change and related weather conditions. Now more than ever, it’s crucial to better understand the science of changing climates and their impact on the health and well-being of older adults.

Learn how NIA is tracking older adults’ preparedness, adaptation, and resilience to climate change and extreme weather conditions. Read the full blog post.