World AIDS Day 2016 – Aging & HIV/AIDS

In recognition of World AIDS Day today, December 1st, we at the COAPS Institute are highlighting the importance of addressing HIV/AIDS in the older adult population.  We begin with some basic information and then focus on the issue of aging and HIV/AIDS.  Resources are included if you’d like to learn more!

The Basics

HIV stands for Human Immunodeficiency Virus.  HIV can lead to Acquired Immunodeficiency Syndrome (AIDS) if it is left untreated.  HIV is transmitted through certain body fluids.  It is important to note that HIV is NOT transmitted by air, water, saliva, sweat, tears, insects, pets or by sharing toilets, food or drinks.  

Although the scientific community is earnestly working towards effective treatment, there is not yet a cure for HIV/AIDS.  Medical advancements have come a long way since the discovery of HIV/AIDS in 1981 and with proper medical care, HIV can be controlled.  Antiretroviral Therapy (ART) is the medicine used to treat HIV.  If taken the right way, every day, ART can dramatically prolong the lives of many people infected with HIV, keep them healthy, and greatly lower their chance of infecting others.

HIV/AIDS in the Older Adult Population

The following facts from the Centers for Disease Control & Prevention (CDC) highlight the importance of addressing HIV/AIDS in the older adult population.

  1. People aged 55 and older accounted for 26% of all Americans living with diagnosed or undiagnosed HIV infection in 2013.
  2. People aged 50 and older have the same HIV risk factors as younger people, but may be less aware of their HIV risk factors.
  3. Older Americans are more likely to be diagnosed with HIV infection later in the course of their disease.

There are three critical areas of need that COAPS and other aging providers and advocates should be aware of: screening, education and stigma. 

  1. Education Health literacy, the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions, is critical to knowing one’s risk and preventing disease.  Many older adults lack knowledge about HIV and how to prevent contracting it. Older adults also face some unique issues.  One such issue is dating after a divorce or after losing a partner; in these instances, older adults may not be aware of their risks for HIV or believe that HIV is not a relevant issue. Thus, they may be less likely to protect themselves.  Another issue is women who no longer worry about becoming pregnant may be less likely to use a condom and to practice safer sex.  Additionally, age-related thinning and dryness of vaginal tissue may raise older women’s risk for HIV infection.  There is a wealth of information available online that older adults can access to gain more knowledge and improve their health literacy. 
  2. Screening Much like addressing mental illness or substance use in later life, many providers may not always test older adults for HIV because they do not see it as a primary concern.  Although older adults visit their doctors more frequently than younger age groups, older adults are less likely to discuss their sexual habits or drug use with their doctors.  In addition, doctors are less likely to ask their older patients about these issues. This is a problem because we know that if ART is taken right away, a person’s health and quality of life is greatly improved and the risk of transmission is reduced.  Older adults can serve as their own advocates by requesting routine HIV screening through their primary care provider.  There are also HIV testing sites available across the county; use the AIDS.gov testing site finder to locate the site nearest you!  It is important to note that Medicare Part B (Medical Insurance) covers HIV screenings once every 12 months. 
  3. Stigma is a particular concern among older people because they may already face isolation due to illness or loss of family and friends.  Stigma negatively affects people’s quality of life, self-image, and behaviors and may prevent them from seeking HIV care and disclosing their HIV status.  Combating HIV/AIDS stigma involves the same principles of defeating other types of stigma.  It includes: knowing the facts about HIV/AIDS; being aware of one’s own attitudes and behavior; choosing your words carefully, not adding to stigma by using derogatory language; educating others about HIV/AIDS; focusing on the positive, such as listening to the inspirational stories of persons with the disease; and including everyone in discussions, not making HIV/AIDS an issue that needs to be hidden. It is important for COAPS and others working with older adults to acknowledge that stigma is a significant barrier to treatment that needs to be addressed. 

For more information, check out these resources!

AIDS.gov https://www.aids.gov/

Centers for Disease Control & Prevention (CDC) http://www.cdc.gov/hiv/group/age/olderamericans/

HIV-Age.org http://hiv-age.org/

National Institutes of Health (NIH) https://www.nia.nih.gov/newsroom/features/aging-hiv-responding-emerging-challenge

The Body: The Complete HIV/AIDS Resource http://www.thebody.com/content/67810/aging-with-hiv-home.html

 

How has caregiving changed in the United States?

There are several reasons why caregiving has changed in our country; the biggest reasons are changing demographics, workforce and health care service delivery. 

Demographics  It is no secret that our population is aging.  What we don’t often discuss is that the number of people who are able to care for our aging population is not growing as fast; so there are, and will be in the future, fewer caregivers to support our growing aging population.  The Caregiver Support Ratio is the number of potential family caregivers aged 45-64 for each person aged 80 and older.  In 2010 this ratio was more than 7 potential caregivers for each person over 80.  In 2030 the ratio is projected to decline sharply to 4 caregivers to 1 older adult and this ratio will drop further still in 2050 (5 caregivers to 1 older adult).  This declining ratio is a problem, as the prevalence of chronic illnesses, such as dementia, increases as individuals age, which leads to increased dependence on caregiver support. 

Workforce A shift in American culture that has impacted family caregiving is the increase of women in the workforce.  As we discussed last week, the “typical” U.S. caregiver is a 49 year-old female who is employed full-time.  Roughly 60% of family caregivers are women; while 40% of caregivers are men. Women continue to provide most of the day-to-day personal and household care.  The dual responsibility of working and providing support as a caregiver can be a 60+ hour per week commitment.  Balancing these and other responsibilities, such as child rearing, can pose great stress on the caregiver making self-care incredibly important.  Some caregivers need to leave their job to provide care to a family member full-time.  These caregivers not only lose income and access to employer health insurance, but also future Social Security benefits, retirement income and job opportunities when caregiving ends.  An additional workforce issue is that there are not enough professionals or paraprofessionals trained to care for older adults. There is a need for career ladders and funding mechanisms to  encourage and support individuals, such as Certified Older Adult Peer Specialists, to provide care to older adults in home and community based settings as well as residential settings. 

Health Care Service Delivery Many people assume that long-term care takes place in nursing homes, but in fact, the majority of long-term care is provided at home by family members. Health care systems have been motivated by cost-containment efforts that move  hospital-based care to home and community-based care.  National policies also drive the growth of community long-term care.  The Olmstead Decision of 1999 was a crucial Supreme Court decision that said people with disabilities need to be cared for in the least restrictive environment appropriate to their needs.  The Olmstead Decision applies to all individuals who need Long Term Supports and Services (LTSS), including older adults.  With these changes in demographics, workforce and health care service delivery, caregivers need resources and support now more than ever.  

For inspiring caregiver stories, check out the Family Caregiver Alliance “Caregiver Connect” webpage.  To submit your own story, visit their online submission form

Check back next week for caregiver resources!  Also, if you would like to contribute to the COAPS Institute blog please feel free to e-mail us at hpearson@upenn.edu!

Sources

The Family Caregiver Alliance National Center on Caregiving https://www.caregiver.org/

The Hastings Center: Family Caregiving http://www.thehastingscenter.org/briefingbook/family-caregiving/

Promoting Community Living for Older Adults Who Need Long-term Services and Support by Jane Tilly, DrPH http://www.nasuad.org/sites/nasuad/files/Issue-Brief-Promoting-Community-Living.pdf

What is caregiving?

November is National Family Caregivers Month and we at the COAPS Institute want to participate in a conversation about caregiving by publishing a series of blogs.  This first blog discusses caregiving basics and shares some facts about caregiving. 

Caregiving is providing support to someone who is unable to care for his or herself.  This support may vary from helping someone with grocery shopping to bathing or  attending doctor’s appointments to advocate for a loved one.  A family caregiver is someone who supports a relative and who is usually providing unpaid, “informal” care. 

Family caregivers, most often women, provide over 75% of the caregiving support in the United States.  An economic value estimate conducted in 2007 showed that family caregivers’ unpaid support equaled as much at $375 billion dollars!  Family caregiving is rewarding, but it may also be stressful.   Over the next few weeks we will be sharing resources and stories to hopefully help caregivers not feel alone and to remind them to address their own self-care.  

Below are some facts about caregiving in the United States.  These facts are taken from studies and reports that have been conducted about caregivers.  The source for each fact is included in parentheses and a list of sources, including the Family Caregiver Alliance National Center on Caregiving website, is found below.

  • The "typical" U.S. caregiver is a 49-year-old female currently caring for a 69-year-old female relative who needs care because of a long-term physical health condition.  The “typical” caregiver has been providing care for an average of 4 years, spending 24.4 hours per week providing care.  The caregiver is typically employed, working full time, and is likely married or living with a partner (National Alliance for Caregiving and AARP, 2015).
  • Caregiving can last from less than a year to more than 40 years. In a 2003 study, caregivers were found to spend an average of 4.3 years providing care. Older caregivers (50+) are more likely to have been caregiving for more than 10 years (17%) (National Alliance for Caregiving and AARP, 2004).
  • Most caregivers live near the people they care for. Eighty-three percent of caregivers care for relatives, with 24% living with the person who receives care, 61% living up to one hour away, and 15%—or about 7,000,000 caregivers—living a one- to two- hour drive or more away (National Alliance for Caregiving and AARP, 2004).
  • Studies show that ethnic minority caregivers provide more care than their white counterparts and report worse physical health than white caregivers (National Alliance for Caregiving and AARP, 2004).
  • Half (53%) of caregivers who said their health had gotten worse due to caregiving also said the decline in their health affected their ability to provide care (National Alliance for Caregiving and AARP, 2006).
  • Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (National Alliance for Caregiving and AARP, 2004).
  • Caregivers report having difficulty finding time for one’s self (35%), managing emotional and physical stress (29%), and balancing work and family responsibilities (29%) (National Alliance for Caregiving and AARP, 2004).
  • The Family Caregiver Council’s website provides information and resources to support family caregivers including information about technology, hiring help, housing, finances, transportation and self-care.

Check back next week for a discussion about how caregiving has changed over time, as well as stories from caregivers!  If you have caregiver stories you would like to share or if you would like to contribute to the COAPS Institute blog please feel free to e-mail us at hpearson@upenn.edu!

Sources

Caregiving in the U.S. 2015 http://www.caregiving.org/caregiving2015/

Comparison of Informal Caregiving by Black and White Older Adults in a Community Population http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2000.tb03872.x/full

Family Caregiver Alliance National Center on Caregiving https://www.caregiver.org/

Family Caregiver Council http://familycaregivercouncil.com/

The Benefits of Positive Psychology and Mindfulness for Older Adults

Under few circumstances does ‘bad’ triumph over ‘good.’ The human brain is one of those circumstances. That is, people are naturally hard-wired to focus on the negative things that happen. Studies show that negative events will have a greater impact on an individual than similar positive ones. Although the bias toward negative events may sound dooming, the good news is that there are evidence-based activities in positive psychology and mindfulness that one can use to overcome it and live happier lives.

Mindfulness is the practice of living in the moment by maintaining a heightened awareness of one’s thoughts, emotions and sensations without judgement.  It originates in Buddhist meditation practices but has been extended to incorporate aspects of other mind-body activities such as controlled breathing and yoga.  Positive Psychology is the scientific study of the strengths that enable individuals and communities to thrive. The two are different but closely related as many positive psychology interventions--activities designed to intentionally increase positive feelings and behaviors--often include mindful practices.

Mindfulness is particularly beneficial to older adults as age-related losses such as physical impairments or ailments, the death of a partner, increased dependence on others and financial decline leave older adults more susceptible to the loss of happiness and decline in wellbeing. Such losses contribute to depression in older adults. Because the symptoms of depression in older adults may be atypical to the common symptoms of depression and are likely to co-occur with illness, depression may be undiagnosed and therefore, untreated.

Studies show that positive psychology can alleviate depressive symptoms and increase overall well being, particularly in older adults. However, the benefits of mindfulness are by no means limited to treating depressive symptoms. Mindfulness activities are believed to have many healing powers including reducing chronic pain, improving sleep, and strengthening the immune system and physiological response to stressors.  These benefits make mindful practices a good preventative measure when incorporated into one’s lifestyle and a good well-being booster. Although mindful practices cannot guarantee improved health, and are in no way a substitute for formal medical advice, mindful practices can be therapeutic in conjunction with a medical regimen prescribed by a physician. For example, mindfulness has been effectively used to help treat anxiety, nausea and insomnia in cancer patients undergoing chemotherapy (insert citation here – or hyperlink). Older adults who are undergoing physically taxing medical treatment may improve their quality of life with the coping techniques that can be acquired through mindfulness.

 So how does it work? Mindfulness heightens one’s attention to what they are experiencing in the current moment. This increased awareness helps people identify what they are feeling both physically and emotionally regardless of whether if it is good or bad. Making a habit ofidentifying how one is feeling can help one identify things that trigger those feelings, making it possible to intentionally seek, avoid or mentally prepare for an encounter with a trigger. Since mindfulness emphasizes non-judgment, it helps people accept what they are experiencing. In other words, mindfulness can be a helpful tool in experience management and an effective coping strategy.  Similarly, positive psychology interventions are intended to shift one’s focus from negative life experiences to positive ones—a mission that works intentionally to overcome human bias toward negative events.  Positive psychology interventions may include activities like writing down good things that happen over the course of a day or intentionally committing acts of kindness. Combined, positive psychology and mindfulness can help older adults learn to adapt to age-related changes and cultivate positive experiences.

With age comes loss and the need to cope with and adapt to change.  Older adults can benefit tremendously from interventions like positive psychology and mindfulness designed to help them cope with these challenges. Older adults deserve the peace of mind that can be achieved by focusing on what is happening in the moment and highlighting the good things that happen in life.

By Kenya Wright

COAPS Blog!

COAPS do amazing work every day, so what better way to showcase their incredible impact than by sharing their stories? Check back soon for our first blog post!