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    Providing Help and Hope to People with Alzheimer’s Disease and Their Caregivers

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    AFA

    Photo Credit: Alzheimer’s Foundation of America via Flickr

    The Alzheimer’s Foundation of America (AFA) was founded in 2002, by Bert E. Brodsky, who was frustrated by the lack of services and support available to families living with Alzheimer’s disease and related illnesses—a lesson he learned firsthand, while caring for his mother.

    “My mother lived with Alzheimer’s disease from 1980 until 1992,” Brodsky said. “At that time, no one understood the disease; no one knew how to deal with it. After her passing, I wanted to get involved–to help educate and support the families living with this disease. I wanted to give them what my family didn’t have—tools and strategies for coping with their loved ones’ condition. I wanted to help them understand what is happening to their loved one—to ask them to try to put themselves in their loved one’s shoes—and to respond with patience and compassion.”

    Since its founding, AFA has grown into a nonprofit that unites more than 2,500 organizations nationwide in the goal of providing optimal care and services to people living with dementia and to their families and caregivers. Its services include a national toll-free helpline and free, telephone-based support groups, free educational conferences and materials, professional training, memory screenings, and more.

    National Toll-Free Helpline and Free, Telephone-Based Support Groups

    AFA’s national toll-free helpline (866-232-8484) is open from 9 a.m.-9 p.m. EDT Monday through Friday and 9 a.m.-1 p.m. EDT on Saturdays, and is staffed solely by licensed social workers. Daily, our social workers field calls on questions as basic as “My loved one was just diagnosed with dementia. What do I do now?” to issues as complex as navigating long-term care and managing the variety of emotions that come with caregiving. They offer counsel, support and referrals to local resources for both family and professional caregivers.

    In addition, throughout the year, AFA’s licensed social workers facilitate a variety of telephone-based support groups. These groups are ideal for individuals who are juggling work, caring for family, and more, and typically take place in the late afternoon or evening. Participants can join from the comfort of their home or office, their car, or any other place they can carve out an hour to get support from both clinicians and peers. Currently, AFA has two ongoing support groups—one that is general in nature, and one that is tailored to adults whose parents are living with Alzheimer’s disease. A support group focused on young-onset Alzheimer’s disease will kick off this fall. Registration is required and space is limited. For more information, call 866-232-8484.

    Free Educational Conferences and Materials

    AFA offers a free, monthly teleconference, “Care Connection,” to give family and professional caregivers practical tips and strategies for navigating their caregiving roles. Each session features a guest host and topics have included making the most of a doctor visit, the benefit of telling your story to create change, recognizing and treating depression for you and your loved one, and advocating for a loved one in long-term care. The teleconference takes place the second Thursday of each month, from 1-2 p.m. EDT. The July session will focus on late-life bullying and the August session will focus on understanding mild cognitive impairment (MCI). No registration is required. To join, call 877-594-8353 and use guest ID# 46692951#.

    In addition to Care Connection, AFA offers free in-person educational conferences—AFA Concepts in Care—throughout the country. These conferences feature a variety of noted experts in the field of dementia care, with topics ranging from palliative care to research, communication techniques and recreational therapies. Free, confidential memory screenings are offered at each conference. The remaining conferences for 2016 are Chicago, Ill. (September 15), Washington, D.C. (September 29), Melville, N.Y. (October 26), and West Palm Beach, Fla. (November 11).

    Professional Training

    AFA is also proud to offer dementia-specific training to healthcare professionals and paraprofessionals of all levels. Our training philosophy is rooted in the belief that optimal dementia care relies on building relationships. This person-centered approach to care values promotes the unique strengths, goals, and humanity of each individual, involves interdisciplinary collaboration among care providers, and places individuals with dementia and their families at the center of decision-making. AFA offers DVD-based, in-person and web-based trainings.

    “AFA Partners In Care: Supporting Individuals Living With Dementia” is a comprehensive six-hour training DVD that has been recognized as a provider of 5.5 continuing education contact hours for licensed social workers by both the New York State Education Department’s State Board for Social Work and the National Association of Social Workers (NASW). Individuals who complete the training, and pass the associated exam, are eligible to receive these contact hours, as well as certification as an “AFA Dementia Care Partner.”

    For more information about AFA’s training programs, click here.

    National Memory Screening Program

    One of AFA’s hallmark programs, the National Memory Screening Program seeks to educate people about brain health and the importance of early detection of memory problems by offering free, confidential memory screenings and educational information, year-round, at sites nationwide. Since its inception, the program has screened more than 2.5 million people.

    Like many other routine health screenings (blood pressure, hearing, skin check), a memory screening lasts just five to 10 minutes. It consists of a series of questions and tasks designed to gauge memory, thinking and language skills. AFA-sponsored screenings are administered by qualified healthcare professionals and while results are not a diagnosis, scoring below the normal threshold can signal that someone should follow up with a physician for a full evaluation.

    It’s important to keep in mind that not all memory issues are a function of Alzheimer’s disease. There are a number of reasons a person could be experiencing memory problems—including lack of sleep, depression, vitamin deficiencies and thyroid problems—many of which are treatable and curable. If a memory problem does turn out to be Alzheimer’s, early detection can help put a person on the proper path to treatment, as well as afford them the opportunity to participate in long-term care and financial planning discussions, to participate in clinical trials and to make known their end-of-life wishes.

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    Elder Care

    How New Tech Can Support Caregivers as They Support Seniors

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    Up to 42% of Americans over the age of 65 take five or more medications, and in 2018, at least one in every five seniors experienced an adverse drug reaction. Such reactions are more common when seniors can’t properly adhere to the instructions that accompany their prescriptions.

    In fact, according to U.S. Pharmacist, nonadherence accounts for about half of treatment failures and a quarter of hospitalizations every year. This, combined with the fact that healthcare providers are largely overwhelmed and overburdened, means caregivers have a unique opportunity to improve senior health outcomes. Caregivers can act as an extension of the medical industry to help seniors overcome the hurdles they face when it comes to medicating themselves properly.

    Why Medication Adherence Is Challenging for Seniors

    Experts agreed that the therapeutic efficacy of any medication requires an adherence rate of 80% or higher. To medicate properly, seniors must closely follow the instructions on each drug’s label and keep a consistent routine around consuming the right doses to avoid complications.

    Unfortunately, the current average for medication adherence for chronic health conditions is only about 50%. For most patients, this isn’t enough to improve or stabilize their conditions — much less boost their life expectancy. But nonadherence is often a combination of hurdles that can be difficult for seniors to overcome on their own.

    For example, the instructions on drug packaging may be confusing, and age-related memory loss can lessen the chances of proper adherence. The side effects of certain medications may also be uncomfortable, making patients hesitant to stick with them. Overall, keeping track of when and how to take various medications can be overwhelming for anyone.

    The Important Role of Caregivers

    Daily routines and medical schedules can be much easier for senior patients to adhere to with the assistance of a caregiver. As caregivers, a patient’s family members, friends, loved ones and volunteers can help ensure seniors take their prescriptions as directed and eat regular meals. What’s more, they can better monitor changing behaviors or symptoms that could indicate a poor reaction to medications.

    Because the healthcare system is becoming increasingly overburdened, healthcare providers don’t always have the time or means necessary to devote to helping patients adhere to medications. Instead, the healthcare system should focus on providing caregivers with tools they can use to make senior care more manageable, especially when it comes to drug adherence. This will become even more necessary as the senior population grows.

    The following tools can help caregivers address the medication adherence problem plaguing American seniors:

    • Automated medication dispensers: Medication dispensers have come a long way — from manually organized pillboxes to modern, automated dispensers that ensure people get the prescriptions they need. One of the most valuable aspects of automated medication dispensers is that they can sync with a mobile application to alert caregivers of missed doses and low prescriptions.
    • Personalized medication reminders: Medical alert systems and healthcare apps — or even simple reminders on a smartphone calendar — are vital to helping seniors prevent missed doses. Some apps are more detailed than others, so consider whether simple reminders will suffice or whether caregivers should receive confirmations as well.
    • Home delivery of presorted medications: In terms of convenience, having presorted medications delivered directly offers a critical advantage for both seniors and caregivers. Automated delivery systems can be synced with medication reminders to create a convenient, holistic routine that makes adherence more accessible than ever.

    When Medication Adherence Is Easier

    There are very clear, immediate benefits to practicing better medication adherence — the most obvious being the success of the medication. Data suggests that for every 10% improvement in medication adherence, healthcare costs can be reduced by 29%.

    Adherence also has a halo effect on other aspects of a patient’s life, improving chances of eating healthy, exercising regularly and taking one’s own personal wellness journey more seriously. Better adherence is key to improving seniors’ quality of life and reducing the burden on the healthcare system, and caregivers are in a great position to help make it happen when armed with the right tools.

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    Aging

    Loneliness May Be Due to Increasing Aging Population

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    Lonely workaholic with alcohol problem

    Despite some claims that Americans are in the midst of a “loneliness epidemic,” older people today may not be any lonelier than their counterparts from previous generations – there just might be more of them, according to a pair of studies published by the American Psychological Association.

    “We found no evidence that older adults have become any lonelier than those of a similar age were a decade before,” said Louise C. Hawkley, PhD, of NORC at the University of Chicago, lead author of one of the studies. “However, average reported loneliness begins to increase beyond age 75, and therefore, the total number of older adults who are lonely may increase once the baby boomers reach their late 70s and 80s.”

    The studies were published in the journal Psychology and Aging.

    Hawkley and her colleagues used data from the National Social Life, Health and Aging Project and the Health and Retirement Study, two national surveys of older adults that compared three groups of U.S. adults born in different periods throughout the 20th century. They first analyzed data in 2005 to 2006 from 3,005 adults born between 1920 and 1947 and a second time in 2010 to 2011 from 3,377 people, which included those from the previous survey who were still alive, and their spouses or partners. The third survey, in 2015 to 2016, comprised 4,777 adults, which included an additional sample of adults born between 1948 and 1965 to the surviving respondents from the previous two surveys.

    The authors examined participants’ level of loneliness, educational attainment, overall health on a scale from poor to excellent, marital status and number of family members, relatives and friends they felt close to. They found that loneliness decreased between the ages of 50 and 74, but increased after age 75, yet there was no difference in loneliness between baby boomers and similar-aged adults of earlier generations.

    “Loneliness levels may have decreased for adults between 50 and 74 because they had better educational opportunities, health care and social relationships than previous generations,” said Hawkley.

    Adults over 75 were more susceptible to becoming lonely, possibly due to life factors such as declining health or the loss of a spouse or significant other, according to Hawkley.

    “Our research suggests that older adults who remain in good health and maintain social relationships with a spouse, family or friends tend to be less lonely,” said Hawkley.

    In a similar study, researchers in the Netherlands found that older adults were less lonely than their counterparts from previous generations.

    These researchers used data from the Longitudinal Aging Study Amsterdam, a long-term study of the social, physical, cognitive and emotional functioning of older adults. A total of 4,880 people, born between 1908 and 1957, participated.

    The study measured peoples’ loneliness, control over situations and life in general and goal achievement. For example, participants rated loneliness on a scale from 0 (no loneliness) to 11 (severe loneliness) based on feelings such as, “I miss having people around.”

    Older adults born in later generations were actually less lonely, because they felt more in control and thus most likely managed their lives better, according to Bianca Suanet, PhD, of Vrije Universiteit Amsterdam and lead author of the study.

    “In contrast to assuming a loneliness epidemic exists, we found that older adults who felt more in control and therefore managed certain aspects of their lives well, such as maintaining a positive attitude, and set goals, such as going to the gym, were less lonely,” said Suanet. “Additionally, as is well-known in loneliness research, participants who had a significant other and/or larger and more diverse networks were also less lonely.”

    Suanet recommended that older adults take personal initiative to better nurture their social ties, such as making friends to help them overcome increasing loneliness as they age. Also, interventions to reduce loneliness should focus more on bolstering older adults’ feelings of control, instead of only offering social activities.

    “People must manage their social lives better today than ever before because traditional communities, which provided social outlets, such as neighborhoods, churches and extended families, have lost strength in recent decades,” said Suanet. “Therefore, older adults today need to develop problem-solving and goal-setting skills to sustain satisfying relationships and to reduce loneliness.”

    Seniors may also want to make use of modern technology to maintain meaningful social connections, according to Hawkley.

    “Video chatting platforms and the Internet may help preserve their social relationships,” said Hawkley. “These tools can help older adults stay mobile and engaged in their communities.”

    Articles: “Are U.S. Older Adults Getting Lonelier? Age, Period and Cohort Differences,” by Louise C. Hawkley, PhD, NORC at the University of Chicago; Kristen Wroblewski, MS, L. Philip Schumm, MA, University of Chicago; Till Kaiser, PhD; and Maike Luhmann, PhD, Ruhr University Bochum. Psychology and Aging. Published Dec. 10, 2019.

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    Aging

    How Universities Can Better Support Student Caregivers

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    More than half of family caregivers are between the ages of 18 and 49 years old – and as the U.S. population ages, increasing numbers of these caregivers will be enrolled in colleges. Often categorized as “nontraditional students,” college-enrolled caregivers are responsible for children, spouses, and dependent parents with disabilities and chronic illnesses. Nontraditional students of all kinds are more likely to drop out of higher education because of obstacles in their non-academic lives, and this certainly holds true for those who have to balance caregiving with their studies.

    Historically, Student Affairs professionals have developed programs and services to meet the challenges faced by underrepresented and underserved students. Given the growing prevalence of student caregivers, academic institutions should keep their needs in mind when distributing funds and creating student support services. While each student caregiving experience is unique, the fundamentals are constant. Very often, student caregivers must choose between attending to a human being for whom they are responsible or attending to academic tasks.

    Students managing such choices, balancing caregiving and academic demands, face significant barriers. For example, the amount of time they are able to spend with faculty and advisors is often limited by their caregiving responsibilities. Furthermore, efforts to disseminate information about support services on college campuses typically focuses on traditional students and thus may miss or leave out nontraditional students who are not part of established campus communication channels.

    Student-Centered Teaching Can Help Caregivers

    Student-centered teaching focuses on individual learning needs to promote persistence and success. Effective student-centered instruction is based on the understanding that one size does not fit all. When an instructor makes accommodations for student caregivers as emergencies arise, such flexibility demonstrates empathy and can promote success rather than indicate compromised standards.

    Consider the following examples from the lives of student caregivers I interviewed in my research:

    • Waldo told me about his experience during his first year of college. He began caring for his mom, who had Huntington’s Disease, while he was in high school. He grew up in poverty and was the first person in his family to go to college. He chose to stay at home and commute to college so he could continue to care for his mom and save money. During finals week of his freshman year, his mom required brain surgery because of a fall. He asked his statistics professor if he could take the final at an alternative time due to his mom’s surgery. The professor replied that it was his choice whether he came to the final or not, but he would not alter the time.
    • Alex, an assistant professor, cared for his mom who had a stroke while he was completing his PhD. He told me he was lucky the stroke occurred around Thanksgiving, when he had a break from the regular requirements of the semester. As he navigated his mom’s recovery, Alex only had to negotiate with his dissertation chair – who allowed him to alter deadlines to ensure he had the time he needed to care for his mom.

    Alex’s dissertation chair practiced student-centered teaching, while Waldo’s professor did not. The advantages to students of such teaching are evident, especially for student caregivers, who need a flexible learning environment to succeed academically and develop healthy coping skills while contending with the overriding needs of those for whom they care.

    Student Caregivers, Technology, Insurance, and Health

    Student caregivers are at a higher risk for stress-related illnesses than their peers, due to their time constraints and intersecting roles; and such difficulties can be compounded when students lack the time and resources to develop healthy coping strategies. Nevertheless, higher education policies have the potential to improve long-term health outcomes for student caregivers by providing access to appropriate supports and resources. Health is at the core of student learning and success. It is in the interest of university administration to ensure access to institutional support and resources, as the following examples suggest:

    • Natalia, a PhD candidate and caregiver, struggled with anxiety and depression. Her dissertation advisor empathized with her situation and allowed her to work remotely instead of commuting to campus when her mom needed care. She was fortunate to have access to all of the university’s technological resources while at home caring for her mom. Natalia’s advisor also encouraged her to apply for emergency funds. The flexibility and knowledge about university resources that Natalia’s advisor provided, helped her develop and employ healthy coping strategies.
    • Anne, a master’s degree student, told me about the university resources she received as a student caregiver. Assistive technology provided by her university was installed on her personal computer, allowing Anne, her husband, and their children to navigate various tools for coping with learning disabilities. Student health insurance provided by the university allowed her to get allergy shots, orthotics, and counseling to cope with anxiety and depression. Financial aid both increased and decreased stress. She worried about paying back the loans, but before she enrolled in graduate school her family did not have the financial reserves to weather a crisis.

    Toward Equity for Student Caregivers

    Like other students, caregivers seek higher education to improve their economic and social resources, but they face many obstacles and graduate less often than traditional students. To level the playing field for all students, administrators should ensure all students have access to health insurance, appropriate personally tailored learning technologies, and the flexible schedules and supportive resources they need to study even when caring for others. Colleges, students, and society alike only stand to benefit if student caregivers face easier routes to degrees.

    Read more in Lisa Schumacher, “The Lived Experience of Student Caregivers: A Phenomenological Study,” University of Iowa, 2018.

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