Supporting People as the Age
A Person-Centered Practices Approach for Successful Support as People Get Older
We already know that we are expected to support people in a person-centered manner. But what that actually looks like, and the language we use to describe what we do, will vary across organizations and states. There is no one single way to be person-centered. However, there are a couple of methods of planning with people that are well-tested and very common across organizations and state systems. In this article, I briefly mention methods of person-centered planning, and the important role of DSPs in supporting people as they age. I provide a resource on common age-related conditions and how they may present in people you support. These can help you hone your knowledge and skills to support people as they age.
Methods of Person-Centered Planning
The Learning Community for Person Centered Practices skills and processes, taught as part of Person Centered Thinking © training, ask us to focus on helping the person balance what is Important To them and what is Important For them so they can lead a life they describe as meaningful and purposeful. The Charting the Life Course framework asks us to describe and support the person’s vision for a good life, by using a trajectory tool to record that vision and clarify what the person, and those who care about the person, wants and does not want. A person’s trajectory refers to the path their life is taking, which can be influenced by their choices, experiences, goals, opportunities, or obstacles they may experience. Both frameworks have multiple useful skills and tools for planning with and supporting people.
Leigh Ann Kingsbury
The expectation that we should use a person-centered practices approach does not change just because the person we are supporting is getting older, becomes frail, has new medical diagnoses or reaches the end of their life. In fact, as people get older, and approach the end of their lives, I would argue our window of time for supporting them well and “getting it right” may soon close. The closer someone is to dying, the less time we have to help them have the quality of life, or quality end-of-life that makes sense to them. It is our responsibility to do our best to support a meaningful quality of life, as defined by the person, no matter what stage of life the person is in.
Defining Important To and Important For
Michael Smull and The Learning Community for Person-Centered Practices introduced the concept of supporting a balance between Important To and Important For in the lives of people using disability services. Sequence matters! Important To and Important For have specific definitions and are connected to each other. We always begin with Important To, and then learn how to support Important For, as part of Important To. Supporting a balance between Important To and Important For is always on-going in people’s lives, as their interests, preferences, health, needs, and other critical issues change.
Important To
When we talk about what is Important To a person, we mean the things in the person’s life that help the person feel satisfied, fulfilled, content, comforted, and happy. Specifically, we mean things in the person’s life such as:
- Relationships
- Rituals and routines
- Good Days, and Not-so-Good Days
- Support for their culture
- Ways the person can assert control in their life
- Things they do that bring status
- Elements that bring purpose and meaning
- Rhythm and pace of life
- Personal belongings, favorite activities, and places to go
Important For
When we refer to Important For, we mean the aspects of the person’s life that support them to be healthy and safe, and welcomed in the community of their choosing. Some examples include:
- Prevention of illness, injury, and chronic medical issues as feasible
- Treatment of illnesses, injuries, and medical issues
- Being free from fear, coercion, intimidation, and harm
- Being welcomed and valued
Being welcomed and valued means having support for things that the person may or may not do, which can cause others to not welcome the person, such as not bathing, being intoxicated or high, or other actions that may cause people to exclude the person.
Important To and Important For Are Connected
It is crucial to understand that almost no one - all of us, not just people with disabilities - will do the things that are typically related to their health and their safety if those things are not important to them. You know that person whose doctor or others who care about them keep reminding them to exercise more often and yet, the person does not do it? Perhaps the person has not found a strong enough reason to do it. If the person cannot connect exercise to something that really matters to them, then why increase activity? We have to help find the “hook,” the reason that helps the person see and feel the benefit of acting on that “important for” element. Below is a story about connecting Important To and Important For in Mr. Hernandez’ life.
Mr. Hernandez loves going to his nephew’s T-Ball games, and spending time with his family. But Mr. Hernandez routinely fails to take his cardiac medications as prescribed. He says he forgets, and he doesn’t like taking so many pills. He also frequently says he does not feel well, and he is often fatigued and short of breath. Lately, he is unable to attend his nephew’s games because getting to the ballfield exhausts him. After meeting with his DSP team, he agreed that it could help if they reminded him of his medications. His team also began reminding him that if he took his meds as prescribed, he might not be as short of breath and he might feel up to going to the T-ball game. These conversations helped Mr. Hernandez see the connection between something that was Important To him (going to his nephew’s T-ball game) to something that was Important For him (consistently taking his medications as prescribed). Understanding that doing something Important For him would help him do something Important To him.
Crafting a Vision
Another useful framework and set of tools for supporting people as they age comes from Charting the Life Course (CtLC). A good person-centered plan moves through life with the person and adjusts as the person’s life changes. People’s interests, gifts, needs, and supports change. Relationships change. What the person wants and does not want from their life may change.
As people get older, there is a need to consider different or increasing supports, possibly a new home, maybe retirement if the person has been working, changes in routines due to decreasing physical or cognitive capabilities, etc. The CtLC Trajectory Tool and the Integrated Star tool can help people think about “next steps,” including what they want to focus on, what they want to ensure is, and is not, part of their life, and the supports needed to make those things happen The CtLC tools are grounded in supporting people in the context of family, however the person defines that. The Trajectory and other CtLC tools can help everyone contribute to and clarify a vision of what the person wants their life to look like as they age.
The Direct Support Professional Role
As a direct support professional (DSP), what is your role in supporting someone as they get older? Honestly, it is not much different than your role in supporting somebody who is younger. It continues to be about supporting the person to have a meaningful and purposeful life, on their terms, with the supports necessary. DSPs align support with the person’s vision for their life, and work to ensure the person is healthy and safe.
One added challenge is that lifelong disabilities may exacerbate ordinary complications of aging, and we must understand the impact of aging, and age-related diagnoses on each person we support. Not everyone will experience significant impacts, but many people will. The rhythm and pace of people’s lives tend to slow down. Typically, older people move, and process information more slowly. It is true that older adults also tend to take more medications than younger adults in the general population. As DSPs, your role is to stay on top of the impact that getting older has on people you support. You need to be familiar with common conditions of aging, and how those conditions may affect people you support. The good news is— as a DSP who spends time developing relationships with people, you are uniquely situated to observe age-related changes. You can help figure out how to best support the person.
When someone you support receives a new diagnosis, starts taking new medicine, or is treated for a condition be curious!! Ask questions so that you can understand.
DSPs must be curious. This is a crucial skill. Ask, ask, and ask again. When someone you support receives a new diagnosis, starts taking new medicine, or is treated for a condition, ask questions so that you can understand. For example:
- What does the diagnosis mean for the person? What is happening to the person’s body and why? What will we observe?
- What is the prognosis? Is this a short-term or long-term issue? What should the person expect to feel like in coming weeks, months, and years? Should we expect it to get better in a few days or few weeks, or will the person live with this issue for the remainder of their life? If they will have it for the rest of their life, what else do we need to know and do to continue to help the person have the life they want?
- What will the person supported experience? For example, will it make them tired? Will it cause pain? Will it make them confused? This is particularly important information to understand. If not understood by everyone who supports the person, there is a risk that symptoms may be misunderstood. For example, if a symptom of the condition or the medications taken for the condition causes them to constantly scratch, it may be mistaken for a “problem behavior” instead of a medical symptom deserving of treatment. Not understanding puts the person at risk of neglect, and also just being miserable.
- What data do we need to track? What information does the treating clinician need us to report? What should we be prepared to tell them when we support the person for a follow-up doctor visit?
- Is the diagnosis curable? Are symptoms treatable? Should we expect symptoms to improve or worsen? What should we do if symptoms get worse? What constitutes an emergency or an urgent need for follow up?
Another challenge for DSPs is continuing to support the person’s right to make their own decisions about their experiences and level of risk, while also supporting the person to be healthy and safe while their capabilities are shifting. As people age, slow down, and perhaps process information differently, we may worry. We may begin to limit how much the person can do on their own. We may want to increase support. This concern may have unintended consequences, such as increasing the isolation the person experiences. In the spirit of dignity of experience and risk, we must not forget that older adults deserve the same respect and opportunities as others.
For example, suppose we know someone’s vision is changing due to cataracts. Previously, the person walked to and from the library without problems. Now, we might say, “how about I drive you to the library?”, or “how about if I walk with you to the library?” Although the outcome of going to the library remains the same, how this change feels to the person and certainly how it looks to others is now different. Imagine that walking to the library on their own always included a stop at a neighbor’s house to give treats to their dog. Now since you are driving the person to the library, they no longer see the dog and their owners. Even though our intentions are good, the person may become more isolated and more restricted in their activities. Our job is to pay attention and be sure that we know what is Important To the person and figure out how to support that. Direct support is about supporting the person’s vision for their life. Now that needs to be done alongside the aging process. If suddenly the way you support feels restrictive, it would not be surprising if the person feels unhappy, angry or frustrated. For DSPs, the question is how we can help the person continue to do what really matters to them (such as walking to the library by themselves) and be safe at the same time because both those are our responsibility.
For the person who walks to the library, if walking by themselves is not really the important part, but getting to the library to meet a friend, and then going to have a cup of coffee or a soda with that friend is really the important part, then having a DSP walk with them, for safety, may be just fine. But, if the person has spent time learning how to cross the street safely, learning how to use a phone to call home if they need help, learning how to get from their home to the library and back, etc.… and suddenly now somebody says “we don’t think you’re safe to do that”, that limitation can feel overprotective and restrictive, and it would not be surprising if the person felt unhappy, angry, or frustrated. For DSPs, the question is how we can help the person continue to do what really matters to them (such as walking to the library by themselves) and be safe at the same time? Because both of those tasks are our responsibility.
Finally, I cannot fail to mention the importance of advanced healthcare planning and directives. As people get older, and they engage with healthcare systems more, it is imperative that everyone involved in their care and support knows what the person wants from their health care team. The person also needs to be able to communicate what they do not want, and who will communicate those wishes if the person cannot. A living will and a healthcare proxy communicate critical information for anyone who provides support and services to an older adult.
Common Conditions and Concerns Related to Aging
Table 1 lists some of the common conditions or diagnoses of aging, some possible impacts on the person, and some tips for DSPs about what to know and do while supporting someone with the associated diagnosis. It is not an all-inclusive list. Overall, DSPs should remember that issues with mobility, gait, and reduced muscle tone tend to be more common in the population of older people with intellectual and developmental disabilities than in the general population, and we should anticipate an increased need for support. As a specific note, older people who have Cerebral Palsy are particularly prone to increased musculoskeletal challenges, including changes in the spine, increased contractures, and a decrease in mobility. A trusted DSP with a strong relationship with the person can actively support the person to create a vision for what life looks like as they get older, including what matters to them, what they don’t want, and the support they would like to reach their vision.
Table: Common Conditions and Concerns Related to Aging
Condition or Diagnosis | Possible Impacts on the Person | What DSPs Need to Know and Do |
|---|---|---|
Changes in mobility – may be due to arthritis, problems with feet, changes in joints, osteoporosis, changes in vision, changes in balance | Pain can be very severe, and may limit the person’s activities Inflammation Increased risk of falling Increased anxiety or fear about walking and moving around, especially on unfamiliar terrain | Do not ignore the issue. Request intervention such as x-rays to assess the condition of a person’s joints.
|
Cardiac (heart) related issues:
| Tiredness Racing heart Shortness of breath Palpitations (the person may say it feels like their heart is jumping or fluttering) | Understand that the person may feel relatively well one day, but not the next. Support the person to follow recommended dietary guidelines; help them understand why it is important to eat healthily. At the same time, recognize there is no “absolute” health and everyone is entitled to enjoy less-healthy foods, too. For people who experience tiredness or shortness of breath, even very short distances can be exhausting. Just because the person “used to be able” to walk to the apartment mailboxes, doesn’t mean they can now. Just going from one room of their home to another may be exhausting. Pay attention to family history. If the person’s parents, grandparents or siblings have cardiac issues, the person may be at higher risk. Pay attention to when the person feels best. Morning? Middle of the day? If the person has a “heart failure” diagnosis, be sure to ask if you need to track their weight. Monitoring someone’s weight is one way to know if the person is retaining fluid, which can be exceptionally dangerous in heart failure. |
Stroke | May affect the person’s speech or motor skills May result in weakness on one side of the body May result in the person taking “blood thinner” medication (see changes in skin) |
People with unmanaged high blood pressure, and people with diabetes have an increased risk for stroke. Pay close attention to all recommended medication and dietary guidelines, to the extent possible. Advocate for stroke rehabilitation: Consider neuro-adaptive, structured exercise such as those from Fit to Function or other neuro-adaptive rehabilitation options |
Skin changes:
| Feeling cold more often (this can result from taking “blood thinners”, and it can also be a result of decreasing muscle mass). An increase in bruising or skin tears from bumping into ordinary things Increased dryness; may itch, feel dry, look flaky Pain – decubitus ulcers and shearing injuries on heels and ankles
| Pay close attention to any area of the body where there is sustained pressure, e.g., buttocks, ankles, elbows, hips. Ask nursing to check for skin breakdown or learn how to check yourself if allowed. Remind the person to carry an extra sweater, jacket, or sweatshirt, even when going places where historically they have not been cold. Remember that people who take medications referred to as “blood thinners” (e.g., Warfarin, Eliquis) will bruise more easily and may need their blood work checked more frequently. Be prepared to support the person in a comforting way if they dislike getting lab work done. |
Vision changes:
| Decreased clarity in vision Seeing things on the sides (peripheral vision) but not well in front Loss of sight | Macular degeneration is the number one cause of low vision and blindness in older adults. Older adults should visit their eye doctor regularly. If they cannot get to the eye doctor, or will not allow someone to check their eyes, pay particular attention to things that may indicate changes in vision, such as:
Any sudden change in a person’s vision is an urgent issue. |
Changes in bowels and bladder:
| Pain, discomfort Confusion and disorientation Decreased thirst | Urinary tract infections (UTIs) can cause severe confusion and disorientation in older adults. Do not assume this is a behavioral issue or just a sign of aging. Always check for UTIs. Sudden onset of confusion, agitation or disorientation is an urgent issue. Note that not everyone will have pain when urinating as a symptom of a UTI, at least not initially |
Menopause | Discomfort: hot flashes, increased frequency of urination, itchy skin and ears, vaginal and vulva dryness Sleep disruptions Difficulty with concentration. | People who have ovaries will experience menopause. DSPs need to accommodate people when they feel too warm; help people dress in layers if they require assistance with dressing. Understand that when someone experiences a hot flash, they may feel fine a few minutes later and wish to put layers back on, and this can occur multiple times throughout the day and night. Some people may need to change their pajamas and even their bed linens if they sweat profusely. Consider a standing fan or a ceiling fan if it helps the person. DSPs should know that people in menopause may sleep differently than they have previously. Some people will sleep more; others will wake up often during the night. Recognize that some people will have difficulty focusing (brain fog”) and may find it difficult to complete tasks. |
Enlarged prostate | Waking up during the night multiple times to urinate (this could also be due to a UTI) “Dribbling” after finishing urinating Difficulty urinating; a weak stream of urine, or stopping and starting while urinating | People identified as male at birth have prostate glands. Older people with a prostate should ensure their primary care physician, or a urologist completes a prostate exam if the person is symptomatic. Some people with an enlarged prostate take medication to address the associated symptoms. DSPs can encourage people to follow the recommended medication regimen, and, as feasible, note if the medications are helping improve symptoms. People with a prostate aged 45-50 years should start prostate cancer screening every few years (this is done with a PSA blood test). |
Changes in hearing | Frustration with not being able to understand conversations Increased isolation as the person engages less in talking with others because it is hard to hear | Losing one’s hearing is not a normal part of aging, but there are expected changes in hearing over time. They may be very subtle. A decrease in inner ear cells may affect a person’s ability to hear certain sounds; and many people find it difficult to hear well or concentrate on conversations in loud places. DSPs should ensure that the person’s ears are checked for excessive build up of ear wax. If a person seems less engaged in typical activities, or seems less responsive when spoken to, make sure to have the person’s hearing checked. Sudden changes in hearing are an urgent issue, and DSPs should ensure the person sees their doctor. |
Alzheimer’s and other dementias | Confusion Forgetfulness Difficulty “finding” the right word for something Inability to make sense of things that are typical in their life, e.g.:
Remembering to put dirty clothes in the laundry or hamper | Dementia is not an ordinary part of aging, although it is more common in people with Down Syndrome than people without. DSPs should use their skills of observation and record keeping for tracking changes they see over time. It is the “changes over time” that give us information about the possibility of dementia or Alzheimer’s. Alzheimer’s and other dementias do not appear overnight. If the person is suddenly and unexpectedly agitated or confused, explore other possibilities (UTI, medication side effects, delirium). |
References
American Heart Association
Definitions from The Learning Community for Person Centered Practices Person-Centered Thinking © training. www.tlcpcp.com
Cox, Harold G. (2006). Later Life: The Realities of Aging (5th edition). Prentice Hall.
Saxon, S., Etten, M.J., Perkins, E.A. (2022). Physical Change and Aging: A Guide for the Helping Professions (7th edition).Springer Publishing.