Introduction and Overview
My name is Kelly Dickson, and I'm an occupational therapist working in Pittsburgh, Pennsylvania. Thank you so much for your participation in OccupationalTherapy.com's virtual conference on aging in place. Today, I will present the introductory lecture in order to define the concept of aging in place. The material that I review today will be expanded upon by my colleagues throughout the course of this virtual conference.
I became interested in this topic when I worked as a research assistant while obtaining my Master's degree in OT. I completed follow-up visits in participant's homes. The participants were frail older adults who were at risk for not being able to age in place, due to chronic conditions, or due to readjusting to life at home following hospitalizations and stays in skilled nursing facilities. After gaining experience out in the community and being motivated to address challenges related to aging in place, I decided to continue my education in a post-professional doctorate program. I completed a quality improvement project that investigated the feasibility of integrating occupational therapy into a geriatric care coordination program for aging in place. Before I became involved, the care coordination program in Pittsburgh employed nurses and social workers who went into older adults' homes and provided referrals and education to long-term care services and supports, in order to support aging in place. My role was to determine the distinct role of occupational therapy in this setting, and to develop a protocol for integrating occupational therapy into the program through screens, informal evaluations, and informal interventions. The ultimate goal was to provide occupational therapy skills training and education to the older adults being served by the care coordination program. The occupational therapy program that I created emphasized empowerment, activation, and training, in order to allow older adults to do things for themselves. The end result was that these older adults felt proud and motivated.
Now, I spend the majority of my time working in skilled nursing facilities, but I do spend one day per week developing a program to better address community-dwelling older adults' functional and safety needs, and to support aging in place. Originally, the program existed in an office that was led by geriatric psychiatrists and other professionals working on a part-time basis (e.g., social workers, physical therapists, occupational therapists, and different nurses). Since then, the program has merged with another clinic, and I work primarily out of an outpatient therapy clinic, where the majority of clients receive orthopedic and neurological therapy services from physical and occupational therapy. Being in the clinic allows me to offer additional support for the clients that are receiving therapy in that environment.
In order to expand our reach, we're also educating different primary care physicians and geriatric medical groups about the program. We hope to assist more older adults who are seeking to age in place. While I am fortunate enough to spend a portion of each week focused specifically on the promotion of aging in place, I take my knowledge of this important topic with me wherever I work. When I work in skilled nursing facilities, aging in place is still a major focus for me. For residents receiving transitional rehab, I am constantly addressing barriers that could limit residents' independence, safety, and confidence when they return home. I make recommendations in collaboration with social workers on what supports and services are indicated upon discharge back to the community. For residents receiving long-term care services, and who are long-term residents in a facility, I try my best to promote connection, familiarity, and independence within the facility, which is now the resident's new home or new community.
What is Aging in Place?
As defined by the Centers for Disease Control (2013), aging in place is "the ability to live in one's own home and community independently, safely, and comfortably, regardless of age, income, or ability level." When we break down this definition, one of the key components is the location, which includes home and community. Furthermore, in order for an older adult to have a good quality of life, they need to feel independent, safe, and comfortable. Finally, the most prevalent restrictions of aging in place are older age, lower income, and changing abilities that challenge normal functioning.
Why Care About Aging in Place?
Why should we care about aging in place? First of all, the population of the United States is rapidly aging (Administration for Community Living, 2016). In the 2014 census, 15% of the population (about 46 million Americans) were older adults (i.e., at least 65 years old). For the 2030 census, it is predicted that 20% of the population (roughly 72 million Americans) will be older adults. Secondly, we know that older adults are more likely to experience the onset and persistence of physical, cognitive and psychosocial impairments (Gitlin, Szanton & Hodgson, 2013). Currently, 80% of older adults have one chronic condition, and 70% have two chronic conditions. Additionally, 42% of community-dwelling older adults are disabled, and every 15 seconds an older adult is treated in the emergency department following a fall.
Despite these challenges, 87% of older adults want to age in place (AARP Livable Communities, 2014). When considering this significant statistic, it is critical to reflect on the importance of the concept of home. Home is a special place. It is our place of security and safety. It is our place for engaging in our most routine and meaningful daily activities. Home is different for every person. It may be traditional or non-traditional, safe or unsafe, clean or dirty, spotless or cluttered (Gitlin et al., 2013; Siebert, 2003). No matter what home represents or looks like, it is connected to the personal themes of attachment, connection, security, familiarity, autonomy and independence. These personal themes are often the primary drivers for why older adults want to age in place (Wiles, 2012).
Take a minute to think about what home means to you. What home means to your parents. What it means to your grandparents. What it means to your neighbors. Home is different for everyone. Across the continuum of care, it's easy to understand why we often hear the phrase, "My number one goal is to go home as soon as possible." I've worked in a lot of different settings, and in nearly every occupational therapy evaluation that I perform, I hear people referencing home, or how their performance in the facility is not the same as it is at home, where all of their goals occur at home. Clearly, home is extremely significant for the older adult.
Case Study: Mrs. H. - Part 1
To better understand the personal themes of aging in place, we're going to review a case study in three different phases. Meet Mrs. H., an 86-year-old widow who deals with chronic conditions and feels anxious and depressed. Mrs. H. lives alone in her two-story home of more than 50 years. Because her family lives more than one hour away, Mrs. H. receives some help from her neighbors and friends. Overall, Mrs. H. is struggling to care for her home and herself. Due to her decreased independence, safety, and quality of life, Mrs. H.'s ability to age in place is at risk.
Take a minute to think about the last time that you worked with someone like Mrs. H., who is at risk for not being able to age in place. You may have worked with this person in the hospital, in a skilled nursing facility, in his or her home, or in an outpatient clinic. How was his or her story similar to Mrs. H.'s story? How was it different? Did you know what could be done, by you or by others, in order to provide this client or patient with assistance? Do you feel optimistic or pessimistic about his or her future specifically related to aging in place? We'll return to discuss Mrs. H., so please keep her in mind as we continue through the presentation.
Long-Term Care Services and Supports for Aging in Place
Older adults frequently seek assistance in the form of long-term care (Gitlin et al., 2013). According to the US Department of Health and Human Services (2017), long-term care is defined as "non-medical services and supports that address personal care needs, such as assistance with activities of daily living [ADLs, or self-care tasks] and instrumental activities of daily living [IADLs, or tasks required for independent living]." While long-term care is often thought to be synonymous with nursing homes, in reality, only 20% of LTC is provided in residential care facilities, while 80% of LTC occurs in the home and community settings (Ball, 2012; Univ. of Pittsburgh Institute of Politics, 2013). The primary intention of long-term care is to provide external support to address older adults' care needs. A concise way to think of this is that long-term care services supports performance tasks for older adults.
External Support and Care Coordination
Long-term care includes the provision of external support to older adults who experience difficulty with daily activities. Some examples of these daily activities and the assistance that could be provided include chore assistance and meal delivery. Additional examples of external support include transportation assistance, home companions, personal care, and emergency response systems.
Older adults may also decide to receive additional support through care coordination. Care coordination helps older adults navigate care options and overcome barriers. Some examples of care coordination would be providing assistance with tasks, such as applying for waiver programs, filling weekly pill boxes, and communicating with primary care physicians. Care coordination can also be understood as team-based care that provides referrals to the best services that match older adults' care needs. Care coordination is also a primary source of education that supports aging in place. The differences between external support and care coordination are occasionally difficult to distinguish.
Take a minute to brainstorm some different examples of external supports and care coordination initiatives that exist in your area. Keep in mind that there are different quantities and qualities of long-term care services and supports in different settings. Older adults who live in urban settings have different resources than older adults who live in rural settings. Think of a few advantages and disadvantages of the services and supports that are in your area. In my area, there are a lot of different options for long-term care, as well as many different agencies and groups that provide both external support and care coordination to older adults in the city of Pittsburgh. One of the difficulties in Pittsburgh is that Allegheny County (the main county that Pittsburgh is within) has one of the highest rates of older adults in the nation, even rivaling some counties in Florida. As such, there are limitations to the supply of resources that exist, even though it's an urban setting. A lot of the time, when people are in the hospital, we might recommend different long-term care services and supports, but sometimes the supply and the demand of these services don't always match.
Formal and Informal Assistance
Long-term care can involve formal or informal assistance. Formal assistance includes paid caregivers, such as employees from agencies. Annual spending on formal long-term care services and supports was recently estimated to be $133 billion (Robert Wood Johnson Foundation, 2014). Informal assistance includes unpaid caregivers, such as family members, neighbors and friends. Annual spending on informal long-term care services and supports was recently estimated to be $234 billion (Congressional Budget Office, 2013). Clearly, individuals who provide informal assistance do not receive a salary. This spending estimate is based on the rate that formal caregivers are paid, in combination with the number of hours individuals spend providing informal assistance to older adults with their personal care needs. The prevalence of receiving assistance is high; 70% of older adults require long-term care for an average of three years (University of Pittsburgh Institute of Politics, 2013).
Take a minute to pause and think about an older adult you know who is living at home and receiving assistance. What type of assistance do they receive? Is it more formal, or is it more informal? What type of assistance do they receive for activities of daily living, versus instrumental activities of daily living? Last week, I was working with a woman in skilled nursing, helping prepare her for discharge home. We were talking about the types of assistance that she had prior to her hospitalization and admission to the skilled nursing facility. She indicated that her son helped her with a lot of different tasks, such as medication management, money management, and IADL types of activities. For the more personal, ADL tasks, such as bathing and dressing, she had a paid aide come into her home to assist her. There are a lot of different roles that formal and informal caregivers can play, as well as a wide variety of tasks that caregivers perform. However, there are certain patterns that exist. It's important to keep an open mind when talking with older adults, to know who they rely on for different activities and what the availability of those caregivers might be.
LTC Services and Supports: Strengths and Limitations
The strengths of long-term care services and supports are clear. Personal care activities that were once viewed as risky, difficult, or impossible by older adults can be performed by external support, and they can be addressed by care coordination, in order to become safe, easy and possible. Essentially, older adults' needs are met by being performed by others.
Limitations of long-term care services and supports are primarily related to supply and demand. As the population ages, there is an increased demand for long-term care, but there is also an insufficient supply of resources (Smith & Feng, 2010). Waiting lists, limited availability of long-term caregivers, inaccessible Medicaid programs, and unaffordable out-of-pocket fees are major problems within the long-term care system. Due to the reality of resource barriers, 60% of older adults who receive formal long-term care experience adverse consequences related to unmet needs in their care (Freedman & Spillman, 2014). This might be related to an error in medication. This could be related to a fall because the home wasn't safe, or caregivers aren't there all the time, so the fall happens at night. Perhaps the emergency response system that was installed wasn't fully charged, or the device wasn't charged. There are a lot of different reasons why needs aren't met and why these adverse consequences occur. Unfortunately, this is the reality for 60% of older adults who receive formal assistance. It's also projected that as the population ages and the demand for long-term care increases, these resource barriers and unmet needs will worsen.
It is also critical to understand that long-term care services and supports are limited by values. Not all older adults are ready to accept help in their homes (Graham, 2017). A recent study revealed that 28% of patients offered home health care refuse services upon discharge from the hospital. Additionally, 6% of patients who agree to home health care upon discharge refuse it later. Not receiving home health care puts individuals at risk for difficult, incomplete, or slower-than-anticipated recovery processes. It also doubles the odds of being readmitted to the hospital within 30 to 60 days.
