Keys to Supporting Older Adults & their Families

Good afternoon, everyone, and welcome to today's webinar hosted by Patagonia Health. Today's webinar topic is Keys to Supporting Older Adults and Their Families. If you aren't familiar with the Zoom webinar platform, take a look at the control panel at the bottom of your screen. Here you can configure your audio settings, send chat messages, and ask questions.

Feel free to say hi in the chat and let us know where you are joining us from today. We are so excited to hear from today's speaker, Nina Herndon, who is the president of the Aging Life Care Association and executive director of Sage Eldercare Solutions. Nina has dedicated her career to improving the lives of older adults and their families, and we're excited to hear her expertise today.

So without further ado, I will stop sharing so you can share your screen, Nina.

Good morning for everyone on the West Coast, and good afternoon for those of you on the East Coast. I'm happy to be here and look forward to sharing with you a little bit of the things I've learned along the way as an aging life care manager.

What Is an Aging Life Care Manager?

So you may ask: what is an aging life care manager? Essentially, we are folks whose job is to navigate and help families navigate the challenges of caring for an aging loved one. We often come from the realms of nursing, social work, gerontology, or psychology, and we specialize in eight unique knowledge areas:

• Health

• Housing

• Legal and financial issues

• Navigating family dynamics

• Knowing local resources

• Providing healthcare advocacy

• Assisting families in a crisis

I just wanted to give you a general sense of what an aging life care professional is, because not many people have come across one before.

We basically work very hard to improve our clients' quality of life and reduce family stress. We start out by making recommendations, doing an assessment, and then providing a set of recommendations based on that assessment, helping the family understand what might be ahead, educating them about the issues at hand, and providing advocacy and coaching along the way.

This Is Everyone's Issue

The first thing I want to share with you is that this is everyone's issue.

Pretty much no one is exempt from the conversation about caring for aging parents. Some people have two parents; maybe you have to care for just one of them at some point in your lifetime. But many people also have a set of stepparents that they potentially care for. So more likely than not, people need to do this more than twice.

It's important to know that we are really on the precipice of a huge demographic shift:

• In 2030, which is just a mere four years away, one in five Americans will be over the age of 65.

• The number of people age 85 and above is projected to triple in the next 30 years, reaching 19 million.

• Older adults will outnumber children in the next 10 years.

So not only are the numbers large for how many older adults there are, but the numbers will grow for those providing family caregiving as well.

Again, this is everyone's issue:

• 23% of adults in the US are caring for an aging parent.

• 7 million people are caring for somebody at a distance, and 66% of them have adverse effects on their mental health or another issue.

For spouses, it's important to be aware that we often devote all of our attention to the unwell spouse, but the well spouse is actually at a significantly higher mortality risk than they would otherwise be, especially if they experience some strain associated with the caregiving they're doing. They are also at great risk for depression.

Adult children are very often caring for their own young children at the same time, and they're often having to travel from around 450 miles away, which could be seven-plus hours. A much smaller percentage live an hour or less away.

Common Challenges You May Encounter

This sets the stage for why we all need to be thinking about these issues. Many people are living with chronic conditions, 80% are living with more than two, and over 90% of adults 65 and older have at least one diagnosed condition.

The things you might come across in your work that you may not know how to handle range from:

• Chronic conditions or a specific medical event that changes everything

• Limited family or social support

• Family members who don't agree on the course of care

• People who are showing signs of dementia or have been diagnosed with dementia

Understanding Dementia

So it can be hard for someone in your position to know how to help. I want to share a couple of important things to know about dementia.

The first is that many people are diagnosed with dementia simply by a primary care physician noticing forgetfulness and marking it in the chart. We need to do better at helping people understand what they have, how to handle it, and how to get proper diagnoses.

It's important to know that dementia is forgetfulness plus an impairment in one of the following areas:

• Executive functioning
• Reasoning and judgment
• Visual-spatial ability
• Word-finding
• Following conversations
• Behavior and personality changes

So the criteria is not just forgetfulness; another cognitive impairment must also be present. Together, those two constitute dementia, which is an umbrella term. That is why it is really important to get a differential diagnosis. "Dementia" in the chart is an inadequate understanding of what is going on for someone.

Types of Dementia

The different dementias range from Alzheimer's, which most people have heard of, to less common dementias like Pick's disease. People may not be aware that there is a newer diagnosis called limbic-predominant age-related TDP-43 encephalopathy, which is why it's called LATE dementia for short. It often shows up later in life and has specific characteristics.

The reason it's important to get a differential diagnosis is that different dementias present differently, require different care approaches, and can react very differently to medications. For instance, a typical Alzheimer's medication like the Aricept and Namenda combination can have adverse effects in somebody with Lewy body disease. Frontotemporal dementia is apt to involve a lot of behavioral expressions of need, disinhibition, and other specific characteristics, many of which are also true of people living with Lewy body dementia. Lewy body dementia also has physical manifestations that can look like Parkinson's-related dementia. So each type has different characteristics, different trajectories, and a course of disease that is important to understand.

Components of a Proper Dementia Diagnosis

A proper dementia diagnosis includes all of the following, not just noticing something and putting it in the chart:

• Physical exam, including gait, walking, and neurological tasks

• Brain imaging

• Blood work to rule out other causes

• A cognitive assessment

Many people use the MoCA (Montreal Cognitive Assessment), but a full neuropsychological evaluation is more the gold standard. In fairness, many people cannot tolerate how long and arduous those evaluations can be.

14 Modifiable Risk Factors for Dementia

Up to 45% of cases of dementia could actually be delayed or prevented by addressing 14 modifiable risk factors. A few I want to call your attention to:

Untreated hearing loss in midlife: As far as I'm concerned, this gives all of us a clear, evidence-based reason to encourage clients to address hearing loss. A hearing aid may feel cumbersome or personally uncomfortable, but untreated hearing loss has real consequences.

Newly added in the 2024 update of the Lancet Commission's findings: treating high LDL cholesterol and untreated vision loss.

Warning Signs That Someone Needs Assistance

I want to talk about the warning signals that someone needs assistance. These are common-sense kinds of things, but they're worth naming.

Physical triggers include:

• Unexplained bruising or falls (and I'd extend that to unexplained dents and bumps on automobiles)
• Neglected personal hygiene, or shortcuts in grooming due to pain or mobility impairment
• Weight loss, old food lingering in the refrigerator, and infrequent replacement with fresh food
• Changes in how someone keeps their home, often related to pain or mobility issues

Cognitive triggers include:

• Problems with instrumental activities of daily living, such as housekeeping, keeping a calendar, and paying bills
• Repetitive conversations
• Confabulation: making up a plausible-sounding answer because the person doesn't remember the actual one
• Avoiding specifics, giving very general answers to specific questions
• Behavior or personality changes that are uncharacteristic
• Getting lost in a typically familiar place

About Aging Life Care Professionals

It can be very hard to know where to turn. We consider our profession a "missing link" that people don't really know exists and don't know when to draw on.

There are 2,000 of us across the country who are members of the Aging Life Care Association. Members must meet certain educational and experience criteria. To be an advanced professional member, a care manager must also be certified. Terms like "care manager" or "geriatric care manager" are broad categories, but if you're looking for someone with demonstrated expertise, the responsibility to uphold standards of practice, and a code of ethics, it would behoove you to look specifically for an aging life care professional.

How We Help Family Caregivers

We often get involved in times of crisis: when something happens that gets everyone's attention and feels like a safety risk, and the family doesn't know exactly what to do. We can:

• Help people get connected to local resources they don't know about, whether that's a transportation service, a meal service, or a specialized provider who provides dentistry in the home
• Help family caregivers go from stressed to feeling like they have a partner and guide
• Help families navigate conflicts and get involved when crises happen
• Monitor situations and, ideally, prevent future crises
• Help families understand their choices and have the information they need to make good decisions
• Provide peace of mind for the family and support for the older adult

It's so often the case that when you get a new puppy you go to the dog park and pick up tips on how to care for it, and the same is true when you have a newborn. But when you're caring for an aging parent, it's often silent, and it's not obvious where to go. That's the gap we fill.

When It Makes Sense to Connect Someone With an Aging Life Care Professional

• When the concerns go beyond what you're familiar with navigating or outside the scope of your job
• When the family says, "I don't know where to turn" or they're feeling very much on their own
• When the older adult is a solo ager, whether due to not having adult children, having outlived their adult children, being a member of the LGBTQ+ community, or having outlived everyone in their circle
• When family members need unbiased information and a third party because of disagreement
• When family caregivers feel overwhelmed and are unsure how to move forward
• When an older adult needs protection from financial or physical abuse

Financial abuse can come from people in trusted caregiving positions as well as from family members themselves.

Restoring the Parent-Child Relationship

One of the most important things we can do is help people go back to being their parent's adult child rather than their care manager. Very often, Saturday visits end up being entirely about making appointments and accomplishing tasks, and the time meant for connection gets used up entirely. If we can get people back to just being with their parent the way only a child can, a professional can handle the other pieces of the equation.

How to Find an Aging Life Care Professional

You can go to aginglifecare.org. There is a small orange tab in the upper right-hand corner where you can type in a zip code, city, or state to find an aging life care manager. There are often several to choose from in a given area. The website also has helpful guides of questions to ask when hiring an aging life care manager. I'd really encourage you to take a look.

Effective Communication With People Living With Dementia

Many people are at a loss when it comes to communicating with someone living with dementia. Here are some basic but important principles.

Core Principles

• Validation over reality orientation: I'll give an example of that in a moment.
• The first time you hear the question is every time you hear the question. That's a rule to live by, and it can be very hard to follow. Sometimes if a question is repeated due to anxiety, some redirection is appropriate, but the kindest thing is to react as if you're hearing it for the first time.
• Give visual cues inside the home. Sometimes we create what's called an "orientation station": a clock that says today's day of the week, and rather than just noting PM, also reads "3 o'clock in the afternoon." It can also list upcoming important appointments.
• When talking with someone, remove distractions, turn off the television or radio, face them directly, ask yes-or-no questions or short questions with options, give people time, slow down, and don't interrupt them while they're working on what they're trying to say.

Thought Leaders in Dementia Care

Naomi Feil taught us about validation versus reality orientation. In practical application, if somebody is repeatedly asking for a mother who has passed away, rather than saying "Mrs. Smith, your mom passed away," you might say, "Are you missing your mom? Tell me about her." That way you don't remind them of news that may feel brand new all over again.

Anthea Snow is a trained occupational therapist with important work on the physical aspects of care. She is best known for her hand-over-hand methodology for working with people at an advanced stage, but she also offers great guidance about meeting people at their level. If they're sitting, don't stand over them. When providing assistance with grooming or bathing, don't approach from the side, as they can't see you coming and it can be frightening and cause an unintended reaction.

John Zeisel speaks to quality of life and the importance of making sure we're not just delivering quality of care, but that we're also thinking about quality of life issues all the time. He talks about preserving interests, keeping people connected with their sense of purpose and meaning, and how art and music can be a great window into someone's world and a way of building connection.

Virginia Bell and David Troxel developed the best friends approach, which emphasizes how well knowing someone goes a long way in understanding and connecting with them. A lot of their work relates to people living in assisted living facilities and to training care community staff. People can move into a care community and be seen only in terms of their current ailments or challenges. Making sure people know who this person is beyond their limitations, whether cognitive or physical, is an important way of connecting and caring for someone.

Finally, Tom Kitwood helped us think about behavioral expressions of need. If someone living with dementia is agitated, it's very helpful to run through a checklist: this person is trying to tell you they need something, and it's your job to figure out what that is. Absent being able to identify that need, sitting with them, listening, and being patient can also help restore a sense of calm.

Some things to consider when decoding behavioral expression of need:

• Are they hungry or thirsty?
• Are they bored, lonely, or tired?
• Do they need to use the bathroom?
• Are they in pain?

Balancing Safety and Autonomy

I want to talk about quality of life and the ever-present balancing act between safety and autonomy. Families, in all their good intentions, sometimes err to the side of safety and want to wrap their parents in as much structure and restriction as possible. That can lead to resistance to accepting support at all, and it can tether people away from things that give them a sense of meaning, purpose, and autonomy over their own lives, especially when so many other things have already been lost. Taking a little risk might be exactly what gives someone that sense of meaning and purpose.

So the ever-present question is: how do we help people balance safety and autonomy?

Q&A

With that, I'd like to turn us over to questions and any areas where people would like to go deeper. I'm happy to share any thoughts about my career as an aging life care manager.

If you have questions, feel free to put them in the chat or in the Q&A box.

Question: What programs or referrals could public health departments use for their aging populations?

People will often refer to the Area Agency on Aging, which specializes in providing connection and very often has an information and referral line. The issue is that family caregivers are often trying to put various pieces of the puzzle together. Maybe they find out about a meal delivery program or a local congregate meal site, but they're confused about how to access providers. Or, for instance, Medicare Part D enrollment comes up in the fall, and there are programs like the SHIP program that help people understand and demystify those options.

A lot of where an aging life care manager can help is taking all those various pieces and making sense of them.

Aging life care professionals are very often fee-for-service, so there's a cost. The good news is people can pay for an hour consultation, or we can be involved on an ongoing basis in a fairly deep way. That said, it's true that this is still not accessible for some, indeed many.

Starting at an Area Agency on Aging is a good place to begin. And for people who are low income, it's worth remembering that aging life care management actually grew out of programs like MSSP and Linkages, which were specifically for the Medi-Cal and Medicaid population. People who would benefit from ongoing case management were eligible because of means limitations. So don't forget about programs that come along with some of those other benefits.

Question (Christine): Any ideas for helping an elderly parent who is wheelchair-bound and can't get out to socialize?

There is a program that was formerly called Senior Center Without Walls, and I believe it's now called Connected at frontporch.net. It's based in California but provides very robust programming for people who are at home. It can also be telephonic, so technology shouldn't be a barrier.

Our organization, Sage Eldercare, also provides programming through the Family Caregiver Alliance called "Getting Away Together," which is a virtual travel series.

I'm happy to talk offline, Christine, if you'd like other ideas. Social isolation and helping people continue to experience a good quality of life and stay connected to things that give them a sense of purpose and meaning, regardless of physical limitations, is a passion area of mine.

Question (Debbie): When someone with dementia has a power of attorney for medical and financial signed that is effective upon signature, does there need to be a formal diagnosis before the POA can take action? This involves an early-onset Alzheimer's client who has not accepted the diagnosis.

I'll give you a tentative answer with the disclaimer that I'm not an attorney.

Most states have a form through their medical association where somebody can name a power of attorney for healthcare and designate what levels of medical intervention they would want. The threshold for capacity to name someone as an agent is lower than for financial matters.

If there's one thing I can say today: if you're working with somebody who doesn't have an advanced healthcare directive, encourage them to complete that first. At a certain point, there is no recourse other than legal means to designate a surrogate decision maker.

If the POA for healthcare is already in place, the document itself will specify what needs to happen in order for it to go into effect. If the person hasn't accepted their diagnosis, a family member can contact the primary care physician and ask them to make a determination on whether this person is able to make decisions on their own behalf. Usually what's named in the document is their primary care doctor and one other physician, or sometimes just the primary care physician, and sometimes it references a specific physician. Depending on the document, it may also be "springing," meaning it takes effect only under specified conditions.

I understand what you're contending with, Debbie: a situation where someone needs to have decisions made for them because they're compromised, yet they're not acknowledging their diagnosis, so everyone is stuck in a kind of purgatory. Your guidance is the document itself, and it will tell you what needs to happen in order for it to take effect.

Question: When caring for an aging parent with dementia, is it helpful to answer a question for them when they should know the answer, or to let them struggle to find it?    

I believe in rolling back one step and setting up the conversation to give them a structured choice. Take lunch as an example: "Mom, would you like chicken soup, a grilled cheese, or something else?" If they say "something else," repeat the process with new options.

I believe in slowing down and giving someone a chance to answer, but there's a difference between "should know" and "does know." Sometimes if you wait, it's simply because the answer is on the tip of their tongue and they just need a minute. Other times, they're about to confabulate because they genuinely don't remember. Listen carefully for the difference.

We're all making educated guesses at some level, but if our default mode is to slow down, give them the chance to answer if they can, and be patient, that would be my strong vote. 

Question (Mindy): Do you have any recommendations or resources for spouses who need support in how to work or live with a spouse developing memory issues? The person I'm working with expresses a lot of anger and annoyance about their spouse's memory issues.

The Alzheimer's Association website is actually very robust. It has training programs for family caregivers on how to communicate with someone living with dementia.

It can be really hard when you've been living with a spouse for many years and things begin to shift. The frustration for a spouse caregiver can be through the roof. I often sit down with people and say, "When you say, 'Remember, Donna, I told you that earlier,' it's not going to help their memory, it's not going to make either of you less frustrated." It's better not to expect them to do something they are no longer able to do. That can take time for people to get their heads and hearts around, because it's genuinely painful.

The Family Caregiver Alliance also has great tip sheets and fact sheets I recommend.

And I really suggest respite for the well spouse. Frustration escalates when that person is spending all their time with someone whose cognitive reserve is diminishing. Enlisting family members or a chosen circle of friends to sit with or go out with the person with dementia, and really encouraging the well spouse to continue the things that give them a sense of purpose and meaning, is critical. As we saw in the statistics earlier, the stress is not good for the well spouse either.

It's not uncommon for us to get calls when the well spouse takes an unexpected turn and now they too need help.

Additional resources for caregiving spouses:

• Respite programs
• Aid and Attendance through the VA (veterans may be eligible for certain hours of home care through this program; it takes time to apply and get accepted, but it's worth pursuing)
• Support groups. People get a lot of validation and feel far less alone. Honestly, that's half the battle of working with an aging life care manager: people just feel like they're not alone anymore.
• The Share the Care program. This is a methodology for gathering not just immediate family but others in someone's circle, whether former colleagues, fellow club members, or long-time friends, to identify what each person is good at and willing to do. People very seldom ask for help, and if you can gather a Share the Care meeting and work through the steps, it can meaningfully reduce the burden.

Also, even if adult children are at a distance, consider what they can contribute. There's often more they can do than they realize.

Thank you so much, Nina. The content I prepared went much more quickly than I expected, so I'm happy to stay and field any further questions, or talk with anyone individually if they'd like.

Thank you for your attention and for learning a little bit about how an aging life care manager approaches the issues you might come across in your work. And thank you for being on the front line and helping people get connected with resources that really matter, and that can make a huge difference in the wellbeing of both the older adult and their caregivers.

Resources Mentioned

- aginglifecare.org

- Alzheimer's Association (alz.org)

- Family Caregiver Alliance (caregiver.org)

- Area Agency on Aging

- SHIP program (State Health Insurance Assistance Program)

- frontporch.net (Connected program, formerly Senior Center Without Walls)

- Share the Care program (sharethecare.org)