Some people believe that dementia care should be provided through programs that are based on proven methods. These should focus on important aspects of care, including support for those who are taking care of dementia patients. This approach could lead to better results and lower costs.
The article also mentions that paying attention to important parts of the program design can help ensure that the way we pay for these programs works as intended and supports equal health opportunities for everyone.
These authors believe care could be improved, and costs could be reduced, if all community-dwelling Medicare beneficiaries living with dementia could enroll in a comprehensive dementia care program. Congressional leaders and dozens of experts have urged the Center for Medicare and Medicaid Innovation (the Innovation Center) to test a nationwide alternative payment model (APM) to provide comprehensive care to those living with dementia.
“Solo agers” (also known as “elder orphans” — not my favorite!) is a term often used to describe an adult over the age of about 55 who does not have a spouse, adult child, or close family member on whom they can rely to provide practical, physical, and/or emotional support regarding medical or financial decisions in the event of incapacitation.
Such situations can exist by choice, or from changing life circumstances, such as the loss of a child or spouse due to divorce, death, or estrangement. A 2016 study estimated that about one in five adults over the age of 65 falls into this category.
Most operate independently in all facets of their lives and never think about the need for a Care Partner, let alone a hands-on caregiver who could help if they became ill or disabled, even temporarily. The truth is solo agers tend to do just fine — until a crisis such as a fall or illness occurs. When that happens, their vulnerability quickly becomes evident.
What’s Different for Solo Agers?
A major component of our work with clients is helping them plan for all eventualities related to their health and home environment. Many of those with traditional support systems in place — spouses, adult children, siblings, etc. — are a bit complacent, assuming that “their person” is fully aware of their preferences for care (especially at end of life).
That may or may not be the case (we still encourage planning for all of our clients), but either way, solo agers do not have the same privilege of reliance. Everything falls back to them and whatever steps they have taken to establish support services and make their wishes known.
Among the solo agers we meet, some purposefully avoid even thinking about ever needing help. Whether due to fear, not knowing where to start, or some combination, they don’t spend time thinking through the options.
At the other extreme, there are solo agers who do quite a bit of planning. They think through all the eventualities and develop plans and even backup plans in case a primary designated representative is no longer able to execute their duties.
Most solo agers, of course, fall somewhere between these two points.
Where to Begin
For those with no plans in place, we advise starting with two decisions:
#1. Identify someone who could make decisions for you medically if you were not able to do so for yourself.
#2. Identify someone who could assist with financial decisions under those same circumstances.
Beyond these two fundamental decisions, it can be helpful to look at others and observe the things that a spouse or adult child does for an older person. The responsibilities can vary widely, from providing minimal support with things like grocery shopping and housework to full-time hands-on physical caregiving.
Older individuals also rely on “their person” for social contact and a sense of connectedness, along with assistance in identifying alternative living arrangements, managing finances, and serving as the healthcare or legal decision-maker in the event they become incapacitated.
As these responsibilities are identified, start to consider how all of these things would occur if you could no longer do them for yourself.
Further Suggestions for Planning
Sometimes, it is fear that prompts us to take action. For my husband and me, the COVID-19 pandemic brought issues related to defining “our person” and our “alternate person” to the forefront. We both made revisions to our healthcare proxies as a result.
Here are some specific suggestions for planning…
Identify a person you feel comfortable asking to be your healthcare proxy in the event you cannot make decisions for yourself. Be sure to have an alternate on file.
Have a formal conversation about the role and reassure this person about all the plans you are putting in place — make them part of the process.
Execute a written healthcare proxy and have it available in writing and in electronic format so it can easily be shared.
Complete a healthcare directive / living willthat outlines your wishes — not only for end-of-life care, but for all the iterative decisions that might be necessary if you were to experience a slower decline in your health.
Meet with your healthcare proxy and alternate, discuss the details, and share the documents.
Conduct periodic meetings to update them on your health status and to identify if anything has changed.
Sometimes, non-family members are reluctant to agree to serve in such capacities for fear of not knowing what to do. Your responsibility in asking this person is to address the fear and relieve them of anxiety as best you can.
Being a “solo ager” is a unique circumstance, one that requires planning in the event you are temporarily or permanently unable to make healthcare decisions for yourself. We encourage you to think ahead and make provisions, so that you have peace of mind that your wishes will be carried out by someone you trust.
Asking someone to serve in this role is a major responsibility. Your planning and communication are what will help them to say yes.
I grew up in a large, extended family; intergenerational living was all around me. And so I just love the thought of institutions perpetuating the trend of intergenerational, university-based living.
The health benefits of intergenerational interaction are well-documented: middle-aged and older adults live longer lives and enjoy better cognition when they spend more time with young people and children. We also see individuals in these environments exhibit decreased inflammatory proteins and increased antiviral ones at a biochemical level. Read more here.
Atul Gawande is someone I feature often in this newsletter.
His guest essay about the aftermath of the pandemic on primary care is a must read.
At the start of the pandemic, Congress enacted the Families First Coronavirus Response Act (FFCRA), which included a requirement that Medicaid programs keep people continuously enrolled through the end of the month in which the COVID-19 public health emergency (PHE) ends, in exchange for enhanced federal funding.
When the continuous enrollment provision ends, millions of people could lose coverage. This brief describes 10 key points about the unwinding of the Medicaid continuous enrollment requirement.
It is hard enough to manage the care of an older adult loved one when they are nearby. Being at a distance — a situation that describes 15% of all caregiver relationships and that is estimated to increase significantly over the next few years — only compounds things in terms of both expense and emotional distress.
So, let’s look at five strategies and suggestions for making this as stress-free and successful as possible!
#1. Start Early
Please get involved now, before a crisis. This will ensure that you are prepared for what will inevitably come as they age.
Talk with them about your concerns, especially with being at a distance. Honor their desire for independence, but address what would happen if they became ill and/or had an injury that left them unable to care for themselves.
You want to help, which means you need their consent to put a structure in place that allows you to do that. Ask them for written permission to interact with their physicians and be sure that documentation is on file with each provider.
#2. Develop Provider Relationships
Here as well, you want to begin before a critical need occurs. Try to attend an upcoming physician appointment so you can meet the doctor(s) face-to-face and describe how interested and motivated you are to be a member of the support team. Let them know that you are only a phone call away and that you have a release form giving you permission to speak with them directly.
Another option is to attend appointments virtually, something that has become much easier since the pandemic. Some offices have a formal system that may include various technology platforms, but you can keep it simple by being on speakerphone or Facetime during the visit. Be sure to proactively let the provider know that you want to participate and that you have permission to be there. Then work with the office staff to make it happen.
For example, my dad had two cataract surgeries in the past month that required a lot of long-distance planning and participation on my part. He did not want to wait until May when he came back north, so we did the best we could, and all went well. I called into each appointment and was able to participate in reviewing his clinical status, detailed instructions for visits, post-surgery care, etc.
#3. Know Their Status
I am continually astonished by the number of people with older adult parents who tell me they know little about their parents’ health care status and/or who their health care team is.
This is problematic. As I have written about previously, it is essential that you have a complete, up-to-date, written list of a loved one’s medical conditions, medications, and care providers. When emergency personnel came to my home last December to care for my mom, I immediately retrieved my lists and it made communication much more effective. The EMT told me he wished everyone had such easily accessible information.
#4. Use the Patient Portals
Ask your parents’ permission to access patient portalsfor every provider they see. Figuring out the technology can be complex — there could be multiple portals, each with its own unique interface, username, and password — but don’t be deterred. It is doable!
Gaining entry to the portals will allow you to access information following visits you can’t attend, access lab results, and most importantly, proactively communicate with providers electronically (a phenomenally valuable and efficient tool when participating in a person’s care from afar).
#5. Ask for Help
Even though I manage the healthcare of clients for a living, my recent experience with my dad’s eye surgeries was more than I could handle from a distance. So, I hired some help. I sought the services of an Aging Life Care Manager who could be physically present, respond to immediate needs, and act as an extension of me. She has been instrumental in assisting my parents and providing me with peace of mind in the process.
Aging Life Care Managers are trained in Aging Life Care™, also known as geriatric care management. This is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges.
I frequently work with these professionals, so I was familiar with their industry and was able to identify someone through their national website (ironically, her name is also Dianne!). I interviewed her and we clicked right away. Fortunately, mom and dad agreed on the relationship, especially when I described how worried I was about not being able to physically be there.
What if My Parents Don’t Want Me There?
If attending an appointment is more than your parents want right now, call the physician practice and identify yourself as Mr. Smith’s daughter. Explain that you live far away but would like to open lines of communication with the physician to describe observations and share concerns. Be sure to then send the release form.
Request a pre-arranged phone appointment with the physician and offer to pay for their time. If the physician is not able to talk directly, ask if there is another key clinical person in the practice, such as a care/case manager, who might be familiar with your parents’ and their health. It could be a nurse, nurse practitioner, physician’s assistant or social worker.
This is an important step as many physicians assume that the reason the children are not directly involved is because they just don’t care. One physician, for example, had major concerns about his patient (my client) and felt resentful about her daughter’s absence. He was reassured when I told him that her mom was not ready. He then asked my client if he could have her daughter virtually join in the next appointment. She agreed and it made a big difference in her future care.
Managing care for others is a complex process that requires a great deal of effort and tenacity. When there is distance involved, it becomes all the more challenging.
However, with the suggestions above, you can achieve a lot. Don’t give up!