Healthcare: Supporting Older Adults with Health and Financial Literacy
By Pamela D. Wilson, MS, BS/BA, CG, CSA
Health and financial literacy represent an ability to receive and evaluate information. A caregiving advocate coordinates with providers and older adults to ensure preventative and ongoing medical care and manage life transitions as the result of aging. Sixty percent of adults, age 65 and over, (before a diagnosis of memory loss) have basic or below average health literacy.(1) A diagnosis of memory loss or Alzheimer’s disease results in subtle early difficulties and an eventual total inability to receive, evaluate information, and make appropriate decisions. Research confirms that the presence of the APOE 4 Allele, a genetic risk factor of Alzheimer’s disease, is associated with lower health and financial literacy.(2)
The other component of health and financial literacy—important to caregiving advocates, family caregivers, and care recipients advocating for themselves—is the ability to confirm understanding of information both provided and received. The traditional sender-receiver model of communication is successful in achieving this goal. The caregiving advocate is able to increase knowledge and support action toward positive health and financial behaviors through these discussions. The caregiving advocate is sensitive to the life transitions of retirement, experiencing declines in health, and mourning losses.
Effects of Low Health and Financial Literacy for Older Adults
Low health literacy results in a variety of challenges. These include locating health services like physicians, therapists, medical offices, labs, and diagnostic testing locations. Review of documents and completion of forms are an ongoing part of receiving medical care. Many older adults are unable to understand information in the forms; meaning that forms are signed out of the desire to receive medical care with little understanding of the agreements made.
The ability to report and share medical history with a physician or other medical provider may be difficult resulting in poor management of chronic disease. Asking questions about a diagnosis or the reason for being prescribed a medication is a common fear of older adults who are embarrassed to ask healthcare questions. Understanding and following directions on prescription labels results in unnecessary hospitalizations because many older adults do not take medications as prescribed. Many simply do not have prescriptions filled.
Low financial literacy contributes to difficulties in evaluating costs of insurance, prescription drug, and other benefit plans. Co-pays and deductibles may be confusing. Budgeting retirement income and savings to pay for housing, health care, and daily living expenses can be difficult. The simple task of balancing a bank statement is rare for older adults with low health and financial literacy.
Gaps in math skills and computational abilities show up in the form of bounced checks. The desire to be helpful to others, results in checks being written to charities when older adults lack the funds to pay for rent or groceries. The ability to manage finances is a gap as individuals begin to experience memory loss. Financial exploitation of older adults is a common occurrence.
A caregiving advocate provides support with a broad range of concerns. It is common for older adults to lack understanding of the longer view or broader picture of how decision making today impacts the future. The effects of a health diagnosis on daily activities may not be considered due to an inability to evaluate information and problem solve. There may be a sense of “I’ll worry about it tomorrow,” because the consequences of acting or not acting are often not explained by healthcare and other professionals.
By having basic conversations, a caregiving advocate, is able to explain information in simple terms. The caregiving advocate’s discussion plan is based on questioning the needs and desires of the older adult. The teach back method can be used to confirm that the older adult understands the information provided. Communication is a complex activity that is easily assumed to be effective. Many would be surprised at how often information communicated is not received accurately. Conversations initiated by an experienced caregiving advocate empower the older adult to make decisions and provides a sense of choice.
Aging and Change: The Stressors of Life Transitions
Responding positively to the changes of aging can be daunting. The stressors of life transitions may result in feelings of overwhelm, stress, fear and dread. While those younger look forward to retirement, many have little insight into the added pressures that retirement places on older adults. All of a sudden, daily routines are changed. Those of us working in the aging industry know that a daily routine is extremely important to well-being. Communication with work acquaintances ends. Unless outside friendships were nurtured, older adults may experience loneliness and isolation. Finances become of greater concern due to fixed retirement income and savings.
Changes or declines in health after retirement may limit the ability to socialize and participate in activities outside of the home. If one spouse has health concerns, the role of caregiving now becomes the daily responsibility of the healthier spouse. Adult children who intend to be helpful “take away” responsibilities that provided a sense of purpose for a parent. Other children may be too busy to help. Sometimes family relationships were damaged years earlier and cannot be repaired.
Change and losses mount, resulting in needed coping skills to manage change. If older adults lacked coping skill when younger, the skill of coping is difficult to learn when older. Stress results in memory concerns including the ability to focus and to remember to complete daily activities.
Cognitive Decline: the APOE 4 Allele, a Genetic Risk Factor of Alzheimer’s Disease
The statistics for diagnosis of memory loss are staggering. In 2018, the number of Americans diagnosed with Alzheimer’s disease is 5.7 million. By 2050, the number diagnosed will increase to 13.8 million. Alzheimer’s disease is the 6th leading cause of death.(3)
Primary care physicians have limited experience with diagnosing memory loss. If patients do not ask, physicians rarely initiate the conversation about memory loss. Individuals with low health literacy may not be aware of the early signs of memory loss and may be fearful of receiving the diagnosis. This lack of questioning by older adults and lack of initiating the discussion by physicians prohibits individuals from planning for future care needs.
Individuals with a family history of memory loss or Alzheimer’s disease may be more proactive in wanting to know the likelihood they may receive a similar diagnosis or have the APOE4 Allele. For these individuals, having the experience of caring for a loved one with Alzheimer’s Disease is usually the motivation to participate in testing. Many older adults want to avoid being a burden to family. The opportunity to make plans for care may offer a sense of control about the future. This desire to know involves a voluntary genotyping assessment and ongoing assessments of cognition by medical specialists called neurologists and neuropsychologists.
Research completed through the Rush Memory and Aging Project3 confirms that the presence of the APOE4 Allele, even in older adults without dementia, was associated with low health and financial literacy. This means that having the APOE4 Allele may not result in a diagnosis of Alzheimer’s disease but still may result in cognitive challenges. With this knowledge older adults and their families have the opportunity to discuss desires for care. Plans may be made for “what if” scenarios so that making decisions in a crisis may be avoided. Questions may be asked before memory becomes faulty.
A Caregiving Advocate Initiates Conversations About Challenges in Health and Financial Literacy
Many older adults refuse help or deny the need for assistance as the result of fear or being perceived as being incapable of managing their lives. Older adults are concerned about having their decision-making power taken away by adult children or other family members.
Having a conversation about health and financial matters can be successful if approached in a manner of questioning and concern rather than expecting what a may be viewed as the correct response. Information is received in different manners. Older adults may not want to hear information perceived as bad news. We all have the power to make good and bad decisions.
Below are suggestions I recommend to initiate conversations about health and financial literacy with older adults:
- Seek to understand. Speak less. Listen more. Ask questions. Do not immediately offering solutions. Take time to think about the information offered by the older adults. Take notes.
- Be patient and then count to 10 and be more patient. Older adults may not easily trust. Fear and confusion are often the reasons that older adults hesitate to make changes or to decide. Restate information, ask for understanding. Ask the older adult to create a list of pros and cons to support decision making.
- Carefully choose the words that are used. While we automatically want to respond with “it will be okay” or “trust me” these statements while well intended are of little comfort. It is better to empathize with a concern. The next step is to ask more questions about the concern so that there is an understanding of the basis. After asking initial questions, ask what the older adult believes would be helpful in resolving the concern. In some situations, the concern may not be immediately resolvable but may require a step by step plan.
- Be curious. Discuss the difficult subjects by asking a question. For example, “what will you do when this happens?” Or “what would you like to happen if this happens?” Ask for preferences to gain a better understanding of the perspective and history of the older adult related to decision making.
- Do not expect immediate change or progress. Progress occurs in small steps that when viewed in the future are to be celebrated.
- Show appreciation. Thank the older adult for being open to have a conversation. This supports trust and lets the older adult know that you value their time and opinions.
As we age into older adulthood we will gain a better understanding of the challenges faced by older adults today. Professionals working in the healthcare industry benefit from an understanding that health and financial literacy among older adults is very poor. It is important to take time to explain information, multiple times if necessary, and to be thorough in confirming understanding. Working in any industry, it is easy to assume others know what we know. This is the least accurate belief with healthcare. Older adults are fearful or hesitant to ask questions or don’t know the questions to ask. This results in poor care and sometimes self-neglect.
As healthcare professionals, consider the type of care you desire for yourself or a parent. Keep this in mind when working with older adults who seem slower physically or mentally. Offer time and compassion in supporting older adults with health or financial literacy.
1. Improving Alzheimer’s Disease and Other Dementia Care Through Health Literacy. Wisconsin Health Literacy. Supported by a grant from Bader Philanthropies, Inc. http://www.wisconsinhealthliteracy.org
2. Christopher C. Stewart, et. al. Associations of APOE E4 with Health and Financial Literacy Among Community-Based Older Adults Without Dementia. J Gerontol B Psychol Sci Soc Sci, 2018, Vol. 73, No. 5, 778-786 doi: 10:10932/geronb/gbw-054
3. Alzheimer’s Association Report, “2018 Alzheimer’s Disease Facts and Figures,” Alzheimer’s & Dementia, 14 (2018) 367-429.
4. Rush University Memory and Aging Project. https://www.rushu.rush.edu/research/departmental-research/memory-and-aging-project
Pamela D. Wilson, MS, BS/BA, CG, CSA, a National Certified Guardian and Certified Senior Advisor, is a caregiving and elder care expert, advocate, and speaker. Pamela offers family caregivers programming and support to navigate the challenges of providing, navigating, and planning for care. She guides professionals practicing in estate planning, elder and probate law, and financial planning to create plans to address unexpected concerns identified in her past role as a professional fiduciary. Healthcare professionals are supported by Pamela’s expertise to increase responsiveness and sensitivity to the extensive range of care challenges faced by care recipients and caregivers.