I have been quiet on this blog for the past couple of weeks. Not because caregiving and our older relatives and friends have not been on my mind. In fact, it's quite the opposite. I have been overwhelmed with news and information – first, about the devastating impact of COVID-19 on the residents at Life Care Center of Kirkland, Washington and their families, and second, about the best ways to protect our vulnerable, older loved ones at this time of intense uncertainty.

I have no insights into medical research or advice that will make any of us caregivers feel more empowered. But, for this post, I turn my attention to small, practical things that we can do to communicate more effectively and meaningfully with parents, relatives, and friends in new ways.

Adjusting to the New Normal

My Mom, who turned 91 this past Sunday, lives in a long-term care facility. The staff there wisely decided on March 12 to ban outside visitors. I felt a mixture of sadness and relief. My mother's safety had been weighing heavily on my mind and I believe that this visiting ban is the best chance we have for keeping the residents safe. I am still able to talk with my Mom on the phone each day and the Activities team has set up a schedule for FaceTime or Skype video calls for residents and families. While these can never replace an in-person visit, a video call is undeniably more delightful than a phone call – seeing my Mom's face and expressions tells me so much about her well-being, even beyond what she conveys in words.

Four Recommendations for Phone and Video Calls

If you are "social distancing" from an older loved one, either by choice or by mandate, here are four tips for making your phone conversations or video calls more enjoyable.

1. Think about your communication style. Many older people process information more slowly. This may be due to hearing loss or memory disorders like dementia or Alzheimer's disease. When speaking to them over the phone or video call, try to be conscious of speaking more slowly and clearly. Using short sentences can also make it easier for older people to process what you are saying.

2. Use visuals on video calls. My Mom was delighted that not only could she see me during our video call, I was also able to bring my computer into my husband's home office, so he could say "hi." While I work from home, I have selected a small physical object to keep with me that reminds me of my Mom. During one of her activities, she made me a small cat figure from clay. When we have our video calls, I hold the cat up to show her.

3. Prepare topics in advance to talk about. Sometimes when older people have memory issues, it's hard for them to keep their end of the conversation going. Before a phone conversation or video conference, I find it helpful to create a list of a few things to talk about – mostly funny anecdotes or information from friends that Mom knows.  The Activities team at Mom's nursing home posts the monthly activity calendar online – this is a great resource, since I have an idea of what Mom is up to and can refer to that in our chats. (As a side note, the Activities team is keeping residents three feet away from one another in keeping with social distancing recommendations.)

4. Look to the past. While we are social distancing or quarantining, it may seem like there isn't much going on to talk about with our loved ones. This is a good time to think back to fond memories and relive them during phone and video calls. Cookbook author and food equity advocate, Julia Turshen, is posting a daily writing prompt at 2pm Eastern time on Instagram related to food. I feel like food is such an integral part of our family lives and a rich source of memories. These prompts could be a potential source of conversation ideas. Turshen's prompt on March 17th was: Is there a holiday food that you look forward to more than anything? What is it and what does it mean to you?

At this time, I hope for health and strength for all of you caregivers and your families. All we can do is our best, one day at a time. Be well.

[UPDATE — I learned this morning 3/18, that activities are no longer being held, since CDC recommendations are to limit gatherings to less than 10 people. This morning, each resident sat in the door of their nursing home room while an Activities staffer stood in the hall at a distance and led them in chair exercises.]

As the nation grapples with rising healthcare care costs, value-based care is a growing trend. Medicare, for example, has implemented a value-based purchasing program that ties hospital reimbursement levels to patient readmissions. If an institution has high levels of readmissions for patients who have undergone certain procedures, it will see a decrease in its Medicare payments, negatively affecting the bottom line.

So, what does this have to do with caregivers? Recent work done by Dignity Health, the Santa Barbara Foundation, the Ventura County Community Foundation, and the Hospital Association of Southern California suggests that caregivers could be one of the missing links in value-based care delivery for seniors.

On February 13, 2020, Grantmakers in Aging held a webinar to explore how the Family Caregiver Navigation project and a pilot project conducted at Dignity Health's Marian Regional Medical Center in Santa Maria, California, are transforming how healthcare systems approach caregiver support and how that is affecting high profile performance metrics like hospital readmissions and emergency department visits among older patients.

The Cost of Care is Shifting to Family Caregivers

The webinar presenters, Phylene Wiggins of the Ventura County Community Foundation and Kathleen Sullivan from Dignity Health, made a compelling case that the cost of medical care for seniors is shifting to family caregivers. They noted that healthcare systems are tending to discharge patients "sicker and quicker." As a result, family caregivers for older patients are taking on the work of managing medications, wound care, special diets, and medical equipment. Wiggins and Sullivan likened caregivers to hospital care coordinators, yet they are working without knowledge of the broader network of resources that could be helpful.

At the same time that the healthcare sector is relying on caregivers to support older patients in home settings, it often takes these people for granted. The National Academies 2016 report, Families Caring for an Aging America, noted, "Family caregivers are often marginalized in the delivery of healthcare….Paradoxically, some providers exclude them from older adults' treatment decisions and care planning, while also assuming they are able, have the knowledge and are willing to perform essential tasks."

With Person- and Family-Centered Care, Value-Based Care Is Easier to Deliver

To facilitate the shift to person- and family-centered care, Dignity Health's Marian Regional Medical Center received a grant from the Santa Barbara Foundation in 2014 to develop a community-based caregiver support collaborative and to embed a caregiver support program within a health system.

The medical center views family caregivers as patient advocates. Caregivers are given special badges to wear which inform clinicians and staff about their role on the care team. In addition, caregivers receive a portfolio with a special logo to organize paperwork and an electronic personal health record to keep track of their family member's care plan. On a quarterly basis, caregivers work with care navigators to create a CareMap. This is a visual representation of the care ecosystem which shows who cares for whom and how.

Marian Regional Medical Center also has worked with community partners and social service agencies to create a network of resources to support caregivers. An important element of the pilot project has been developing culturally-specific outreach, based on the demographics of the local population. To serve Spanish-speaking caregivers, for example, the medical center works with the Promotores Network of volunteers.

Strengthening the culture of family-centered care among clinicians is also essential. Marian Regional Medical Center educates physicians about the role played by family caregivers through its Family Medicine Residency Program. Residents participate in caregiver home visits, as well as home visits for patients receiving palliative care.

The results of the program have been compelling in terms of value-based care. Between June 2016 and March 2019, Marian Regional Medical Center evaluated care receivers' health system usage for six months prior to the start of their care and six months after the start of their care. Hospital admissions decreased 43.78% and emergency department admissions decreased 28.57%.

Caregiver Navigation Programs Offer a Clear Return on Investment and Important Community Benefits

Based on the positive results of the pilot project at Marian Regional Medical Center, the Ventura County Community Foundation and the Hospital Association of Southern California (HASC) have launched the Family Caregiver Navigation project. This is a three-year grant program for HASC affiliated hospitals that serve Ventura County residents.

The Family Caregiver Navigation initiative has created the Caregiver Navigation Toolkit – this playbook is derived from lessons learned at Marian Regional Medical Center. To create a Caregiver Navigation Program, healthcare systems are encouraged to focus on eight elements: staff, caregiver assessments, community partner identification, care planning, referrals, education, integration into health system workflows and clinical care coordination, and program monitoring.

The toolkit estimates that the yearly program cost for a Family Caregiver Navigation initiative is approximately $112,500. This expenditure would be eclipsed by the savings associated with reduced hospital readmissions and costly emergency room visits by older patients, not to mention potential increases to the bottom line through Medicare's value-based purchasing program.

As a caregiver, I for one, would have been thrilled if my Dad's healthcare providers had participated in this type of navigation program. It feels like the healthcare sector is starting to make more meaningful progress toward family-centered care and recognizing the value that family caregivers provide to patients and the healthcare system overall.

The Centers for Disease Control and Prevention defines social determinants of health as the "conditions in the places where people live, learn, work, and play" that affect a wide range of health risks and outcomes. Some of the most commonly cited social determinants of health are income disparities which can limit access to healthy food, the safety of one's neighborhood, stable housing, or one's education level.

Whether or not a person is a caregiver for an older family member seems to be an often overlooked social determinant of health, especially among women. The Family Caregiver Alliance's National Center on Caregiving estimates that there are nearly 44 million unpaid caregivers in the United States and over three quarters are women.

The health effects of caregiving can't be ignored. Researchers have found that:

• Women caregivers are almost six times as likely to experience depressive symptoms and anxiety than non-caregivers.

• Caregivers report chronic conditions like heart attack and heart disease, cancer, diabetes, and arthritis at nearly twice the rate of non-caregivers.

• Caregivers with high levels of emotional and mental strain have more than a 60% higher risk of death than non-caregivers.

The economic impact of caregiving on women can also create a downward spiral with negative effects. A joint report in 2011 by MetLife and the National Alliance for Caregiving found that on average women lose close to $325,000 in compensation due to caregiving. Imagine that a woman in her prime earning years devotes time and energy to family caregiving. The loss in income may limit her ability to live in a safe neighborhood with access health food. Even if lost income doesn’t have immediate negative effects, it may reduce the amount of money that the woman is able to save for both retirement and her own long-term health expenses.

What Can the Healthcare Community Do for Caregivers?

The encouraging news is that the health effects of caregiving may be easier to address than some other social determinants of health. I say this because there are two possible sources of assistance:

1. The family member's physician. Maria Carney, the Chief of Geriatric and Palliative Medicine at Northwell Health, suggests that the physicians caring for older patients should prioritize the caregiver's needs along with the patient's needs. When I was caring for my Dad, I found that his cardiologist did just that. Typically, patients were asked to come to the office for two separate appointments – one to see the cardiologist and a separate appointment to see the nurse for periodic pacemaker checks. The cardiologist knew that I had to take time off work for these appointments, so he asked the scheduling team to book them back-to-back on the same day, so I could limit my time away from my job.

2. The caregiver's own physician. With more and more adults taking on caregiving roles, it would be beneficial if primary care physicians proactively asked patients whether they are caregivers and then kept an eye on health conditions correlated with caregiving. Many primary care doctors have information in electronic health records which indicates whether a patient's parents are still alive and perhaps even how old they are. This data could be used to create a flag for doctors to inquire about caregiving during office visits.

Even if the healthcare community doesn't ask caregivers how they are doing, caregivers can advocate for themselves by discussing how this responsibility may be affecting their physical and mental health with both their own doctors and their family members' physicians. Recognizing the potential health impacts of caregiving is first step toward positive action.

As people age, most want to live in their own homes as long as possible. Determining how much money your parents may need as they age, however, can be challenging. Most retirement calculators offer numbers based on national averages and don't take into account how healthy a person is. A new resource is now available which could be extremely valuable for caregivers.

The Elder Index

The UMass Boston Gerontology Institute recently developed the Elder Index which measures the income that older people need to meet their daily living expenses, while staying independent in their own homes. It has been calculated for every county in the United States. Living expenses can be calculated based on the following variables:

• Whether the individual lives alone or with a spouse/partner

• Whether the individual rents, owns a home and has no mortgage, or owns a home with a mortgage

• Whether the individual is in excellent, good, or poor health

It should be noted that the expenses are based on a "bare-bones" budget which excludes restaurant meals, vacations, gifts for grandchildren, etc.

The Congressional Budget Office has praised the Elder Index for its geographic specificity, focus on elder-specific expenses, and household-level measurement.

An online Elder Index calculator is available which allows users to select the appropriate variables for household, housing status, and health status, and then compare monthly expenses across up to four counties for the following categories of expenses:

• Housing

• Food

• Transportation

• Health Care

• Miscellaneous

Using the Elder Index to Support Caregiving

Finances are always a concern as people age. Researchers at UMass Boston have found that in every state in the United States, at least 41% of older people who live alone have incomes that fall below the Elder Index.

From a caregiving perspective, the Elder Index could be useful for adult children who are responsible for their parents' finances. The tool offers insight into minimum living costs based on where a family member's lives and their health. For financial planning purposes, I think the estimates of food, transportation, health care, and miscellaneous are most useful. Housing expenses, such as rent, mortgage payments, or other housing-related expenses, are highly individual and should be fairly easy to gather on a case-by-case basis.

With the expense estimates from the Elder Index as a starting point, it could be valuable to:

• Develop a more comprehensive estimate of living costs by adding in expenses for "nice to haves" such as restaurant meals or vacations

• Compare current grocery bills to the food cost estimates provided by the Index

• Project how costs may increase as a person's health declines over time

• Add in estimates for in-home care

• Evaluate what the financial impact would be, if a family member moved to a different part of the country (or even a different county in the same state) in order to live closer to children or other relatives

Although one of the primary purposes of the Elder Index is to help public policy makers develop benefit programs that address the true needs of older individuals, this tool is also a great resource for families as they consider the financial implications of aging in place. To learn more about the Elder Index, a webinar originally broadcast on January 16, 2020 can be viewed at the Grantmakers in Aging website.

In recent years, continuing care retirement communities (CCRCs) have become popular options for some older people. Making the move to this type of living arrangement is a major decision – both from a financial perspective and a personal one. Here are five things to think about if your family member or loved one is considering a move to a CCRC…

1. How "complete" is the continuum?

Some CCRCs provide a "complete" continuum, ranging from independent living to assisted living, memory care assisted living, and skilled nursing care (i.e., a nursing home). Others offer a more limited range of services, excluding skilled nursing care.

If your family member moves to a CCRC that excludes skilled nursing care, there is a high probability that you will eventually need to research skilled nursing facilities and help them make a move to a different place. This is what happened to me.

When it was no longer possible for my parents to stay in their home, I moved them to a CCRC that had memory care for my dad and both independent and assisted living for my Mom. I chose this route, in part, due to financial considerations – the CCRC I selected did not have a "buy-in" fee (more on the financial structure of CCRCs later).

This path, however, meant that my parents had to move twice (once to the CCRC and later to a skilled nursing facility as their needs grew beyond the capabilities of assisted living and memory care assisted living). Adjusting to another new place took an emotional toll on them. It also required me to engage in time-intensive research twice – once for the CCRC and once for the skilled nursing facilities. In retrospect, I'm not sure I would have made a different decision, but be aware of what may be in store if a CCRC does not include skilled nursing care.

If you are considering a CCRC that includes skilled nursing, be sure to research that portion of the facility on Medicare's Nursing Home Compare web site. This offers insights into health inspections, staffing, and quality ratings.

2. Is the CCRC run by a non-profit or for-profit organization?

One isn't necessarily better than another. However, nonprofits tend to be mission driven and may be more focused on resident care. Financial statements for nonprofit run CCRCs can be reviewed at Nonprofit Explorer.

3. Is the CCRC part of a larger group of communities?

If the parent organization runs several CCRCs, it's a good idea to look at the financial health of all the communities. Buy-in fees from a "healthy" CCRC may be funneled to subsidize the financial strength of struggling communities.

4. What is the CCRC’s business model?

Most CCRCs have a buy-in fee, plus ongoing monthly fees for residents. The Commission on Accreditation of Rehabilitation Facilities (CARF) distinguishes between three types of CCRC entrance fees:

• Declining scale refunds. Entrance fees are amortized over time. The amount of the entrance fee refundable to a resident decreases over time.

• Partially refundable entrance fees. A certain percentage of the entrance fee is refunded, regardless of how long an individual lives at the CCRC.

• Full refunds. In some cases, a fixed fee is deducted from the refund.

Monthly fees usually cover a very specific set of services. Anything that a resident needs over and above this list is charged on an a la carte basis. For instance, when my Dad was in memory care assisted living, he routinely needed extra aide time to assist with personal care and bathing. This always added $800 to $1,000 extra to his bill each month. For a time, this was still more economically attractive than the cost of skilled nursing. However, his needs eventually exceeded what the memory care assisted living team could provide.

CCRCs use a wide variety of contract types. AARP offers a helpful summary on its website. As noted, it's always a good idea to have a lawyer review a CCRC contract before committing. Keep an eye out for "fine print" – for instance, some communities don't issue refunds until a unit has been reoccupied.

5. What do the underlying finances for the CCRC look like?

CCRCs as a whole are largely unregulated. If the community includes a skilled nursing facility, that will most likely be regulated by the Centers for Medicare and Medicaid Services (CMS) on factors related to health and resident safety. The finances of CCRCs, however, are not subject to federal regulation.

As a result, it's essential that potential residents and their families conduct thorough due diligence into the financial health of a community before making a commitment to move there. Be sure to ask for an audited copy of the community's financial statements. If the community is part of a larger group of CCRCs, ask for financial statements for all the communities.

If you don't have financial knowledge yourself, hire a financial advisor to review the statements on your behalf. CARF has developed a set of financial ratios that are useful for analyzing the financial health of CCRCs.

The Wall Street Journal and the New York Times recommend keeping eye on the following when reviewing CCRC financials:

• Cash on hand. How long could the CCRC operate with no additional revenue?

• Cash-to-debt ratio. As a general rule, this should be around 35%.

• Occupancy rates. Rates of 90% or more for several years is a good sign.

• Reserves, income, and cash flow for long-term needs. Ask to see the CCRC's latest actuarial valuation. This report will show if the community has the necessary reserves, income, and cash flow to meet resident needs for the remainder of their lives.

• Monthly fees. These typically increase between 3% and 3.5% per year. While it may seem desirable to have stable monthly fees year-to-year, a lack of increases can be an indicator that the community is having trouble maintaining its occupancy rate.

• Bond ratings. If the community has issued bonds to raise money, look for bond ratings between AAA and BBB.

Additional Resources

• myLifeSite – This site provides access to information on over 800 CCRCs. A subscription is $29 per month and can be cancelled at any time.

• Worksheet for CCRC visits. Legg Mason has created a helpful survey to bring on CCRC visits with a variety of important questions.

The scenario is all too familiar – you have an older family member and they've had a couple of minor at-fault accidents. Perhaps you feel unsafe as a passenger in their car or you'd never let them drive your children anywhere. Learning to drive is a rite of passage when we are teenagers and learning how not to drive is just as significant a rite of passage as we age.

Clinical Driving Assessments and Driving Skills Evaluations

Some physicians are "prescribing" clinical driving assessments or driving skills evaluations to patients. This can be a relief to caregivers who don't want the duty of convincing a relative or loved one that they should stop driving. These services are also useful in terms of providing a structured, quantifiable way of evaluating a driver's capabilities.

Clinical driving assessments and driving skills evaluations are similar, but not identical. AAA defines them in the following ways:

• Clinical driving assessments. These are conducted by individuals who are medically trained occupational therapists. The assessments include a review of the individual's medical history, a cognitive assessment, an on-road driving test, and recommendations for next steps. These may include specialized training, vehicle adaptations, or cessation of driving altogether.

• Driving skills evaluations. These are conducted by organizations that are licensed and certified by states to offer driver training. The objective of a driving skills evaluation is to capture information about an individual's driving abilities at a point in time. It does not identify medical causes for reductions in a person's driving ability.

Every state has different rules and regulations related to older drivers. Some issue informal recommendations, while others have formal license restrictions. For instance, drivers may only be allowed to drive a certain distance from home or they may not be allowed to drive at night or on freeways. In some states, physicians are legally responsible for reporting drivers they believe to be "unsafe" to the licensing agency.

The National Highway Transportation Safety Administration's (NHTSA) Clinician's Guide to Assessing and Counseling Older Drivers offers six questions to consider if you or a family member is selecting a driver evaluation program:

1. How many years have they been offering these services and what types of clients do they serve?

2. Do they offer comprehensive evaluations that include both clinical and on-road assessments?

3. Do they offer driver rehabilitation and training?

4. How much do assessments cost? If rehabilitation or adaptive equipment for a vehicle is recommended, how much do those typically cost?

5. Who will receive a copy of the assessment report? If reports are sent to the state licensing agency, that should be clearly stated upfront. Even if reporting is not legally mandated, some organizations voluntarily send assessments to the state in the interest of public safety.

6. If the evaluator recommends that the individual stop driving, what counseling is provided to identify alternative transportation services?

When the Assessment Says Driving is No Longer Safe…

Caregivers may have a sense of relief if a family member takes a driving assessment and does not pass. However, the task of developing a transportation plan remains. Ridesharing services like Uber and Lyft are one alternative, but a potential obstacle is that some older adults don't have smartphones due to a lack of "tech savviness."

Some caregivers elect to schedule Uber or Lyft rides for family members themselves. This is certainly an option, but it may take away a person's sense of independence. Also, it may not always be practical for caregivers to take time away from work or personal responsibilities to schedule rides.

Another possibility is GoGoGrandparent which is a concierge "middle man" between riders and rideshare drivers which removes the need for a smartphone. After registering with the service, the rider calls an 800 number and use key prompts to schedule a pickup. Once the driver arrives, text message updates can be sent to an emergency contact like a family member. GoGoGrandparent charges a "concierge fee" of $0.27 for each minute of the ride. A friend's mother recently started using this service and has liked it thus far. Online reviews at Yelp and Better Business Bureau, however, reveal mixed experiences. Some users have reported billing issues. Since riders have no way to communicate directly with drivers, problems can arise if drivers can't find the pickup point (e.g., at a large mall) and "no show fees" may result.

Another similar "middleman" ridesharing service is GreatCall Rides which works with Lyft. GreatCall Rides requires riders to have a Jitterbug mobile phone (sold by GreatCall). Riders dial zero and request a ride from a live operator. The operator provides an estimate for the ride cost prior to booking. Once the ride is complete, the fare is added to the rider's GreatCall bill. It appears that the GreatCall Rides service requires riders to subscribe to a Health and Safety plan ($34.99 per month) which includes a personal operator. In addition, a surcharge is levied on each ride scheduled through GreatCall.

Outside of ridesharing services and concierge "middlemen," the market for senior transportation services is quite fragmented and varies based on region. Local Councils on Aging may be good resources to learn about community-based transportation options, such as Senior Center paratransit services, volunteer drivers, and more.

Starting the conversation about transportation alternatives early (i.e., before family members and loved ones can no longer drive safely) makes sense. Consider, for example, using a ridesharing service to go out to eat with an older family member even when you both can drive. Treat it as a fun experience which also generates familiarity with the process. Just as learning how to drive takes time, so does learning how not to drive.

Additional Resources:

American Occupational Therapy Association's database of driving programs and specialists

The Association for Driver Rehabilitation Specialists directory of Certified Driver Rehabilitation Specialists and Driver Rehabilitation Specialists

Independent Transportation Network America

During the last two months of 2019, I was conspicuously absent from this blog. I'm happy to report that the reason was an extremely busy work schedule – no caregiving emergencies. I'm a self-employed business writer and when work is available, I try to take as much as I can…The flexibility is great, but it's also a double-edged sword.

Starting in 2012, as my Dad dealt with his worsening dementia, I was able to adjust my workload and work schedule to focus on caregiving – that ranged from bringing him to doctor's appointments and advocating for him to filling weekly pill boxes, managing finances, maintaining my parents' home, and more. My chosen career enabled me to spend much more time with my Dad than if I'd had a corporate job.

On the downside, that flexibility combined with the prioritization that I gave to caregiving translated into years of lower earnings. My Dad passed away in the spring of 2018, so 2019 was the first year in a long while that I worked without wearing the caregiving mantle. My "focus group of one" revealed that my revenues increased by over 25% between 2018 and 2019. The dramatic reduction in caregiving hours after my father's death contributed significantly to that increase.

The economic impact of elder caregiving is a critical issue across the United States:

• The work-related opportunity costs of elder caregiving are high. The AARP Public Policy Institute has estimated that in 2013, the economic value of services provided by "informal" (i.e., unpaid) caregivers was $470 billion. On average, caregivers in the 45 to 54-year old range provide 25.8 hours of care per week. Researcher Courtney Van Houtyen and her colleagues have estimated that women between the ages of 51 and 70 work three to ten hours less per week when providing unpaid care to family members.

• Significant amounts of unpaid care are associated with cognitive diseases. The Alzheimer's Association estimated that in 2014, the economic value of care provided by unpaid caregivers for Alzheimer's and dementia sufferers was $217.7 billion. Diseases that affect cognitive functioning take a tremendous toll on caregivers in terms of time and emotional impact.

• The economic challenges associated with unpaid caregiving are likely to get bigger. A recent research paper, Work-Related Opportunity Costs of Providing Unpaid Family Care in 2013 and 2050, suggests that over the next 50 years, the number of older Americans with disabilities will increase 2.5 times. Yet, the number of potential caregivers is not projected to increase at the same rate. As a result, significantly more working-age Americans will be providing care to elderly relatives in the coming decades. "Care-related forgone earnings" are likely to increase significantly, while opportunities for promotions and job security may decrease.

A Federal Response to the Family Caregiving Crisis

In January 2018, the federal government signed the Recognize, Assist, Include, Support, And Engage (RAISE) Family Caregivers Act into law. The objective of this legislation is to create a national family caregiving agenda, as well as to enhance coordination across government programs supporting caregivers and care recipients.

The RAISE Family Caregiving Advisory Council convened its first meeting in August 2019. The council's mission is to develop recommendations related to the federal government's strategy to support unpaid caregivers. This group of 30 individuals is divided into two groups – a team of 15 voting members and a team of 15 advisory members. The Council members represents caregivers, employers, older adults, individuals with disabilities, healthcare providers, providers of long-term care services, state and local officials, and veterans.

Elder caregivers have a unique opportunity to make their voices heard about the challenges they face. The RAISE Family Caregiving Advisory Council is soliciting public input online until Friday, February 7, 2020.

Go to this online form and provide your thoughts on two key questions:

1. What is one pressing family caregiving need or concern that you would like to see addressed?

2. What is a specific recommendation that you would offer to address this need or concern?

Looking Ahead…

One of my 2020 resolutions is to resume regular posts here. Topics I'm considering for the new year include driver assessment companies that evaluate seniors' driving skills, transportation services that can help when a family member can no longer drive, continuum of care facilities, "age friendly" architecture in public buildings, and more. Let me know if there are topics you want to talk about this year.

The Medicare Open Enrollment period for 2020 coverage runs from October 15, 2019 to December 7, 2019. During this time, individuals can enroll in Medicare Advantage Plans, Drug Plans (Part D), and Medigap Policies.

My Mom recently received documentation from her insurance company which indicated that her 2019 prescription drug plan would be changing in 2020. As a result, I decided to start looking into alternatives. This is turning out to be a complex process.

Some Calculators Are Black Boxes

First, I used an online calculator and "compare tool" offered by the retiree benefits website sponsored by my Dad's former employer. I entered my Mom's medications and discovered that her existing insurance plan was going to cost over $10,000 a year, between the premiums, the deductible, and the out of pocket drug costs. That seemed crazy, compared to some of the alternatives that were provided. Yet, it wasn't clear from the calculator what accounted for the dramatic differences in price.

I had some theories – I had looked up all my Mom's medications on the existing insurance company's drug formulary to see what "tier" they fell into -- preferred generic, generic, preferred brand, non-preferred brand, or specialty. One of her eye drops and one of her other medications fell into the "preferred brand" category, so I suspected perhaps that was the culprit…

Can You Trust the Insurance Companies' Online Calculators and Information?

Next, I went to Mom's current insurance company's Medicare prescription plan compare tool. On the company's website, it looked like her pharmacy was considered "in network" for 2020. I entered all the medications again into this online tool. This calculator forced me to figure out what "fraction" of a bottle of eye drops Mom used every day. For those who are interested, the standard conversion factor is 1 milliliter of liquid eye medication equates to 20 drops. The insurance company's calculator made it seem like Mom's 2020 costs were going to be more like $2,000 a year.

The Medicare Online Compare Tool – Some Visibility at Last!

Maybe I'm like a dog that won't let go of a bone, but the discrepancy between the retiree benefits website calculator and the insurance company calculator continued to bother me. I then went to the online calculator on the Medicare website. By now, I'd practically memorized Mom's drug list. I entered the information into the site and compared her current insurance company's 2020 plan with a couple of other offerings. Once again, the estimated cost for her current company's 2020 plan was over $10,000. The good thing about the Medicare calculator, however, was that it clearly showed that her current pharmacy was out of network in 2020. I had found the missing link!

I then did an online chat with the existing insurance company to inquire whether the pharmacy was in fact out of network for 2020. The representative confirmed that was the case. Why it shows up in their online search tool for 2020 as "in network" is beyond me. That misinformation could have been very costly, if I'd decided to stick with this same company for Mom's prescription plan in 2020.

The Saga Continues…Next Steps

Now that I have finally determined that staying with the same insurance company isn't a good option, the search begins in earnest to find a better alternative. Some things to consider if you're going through the same process for a family member:

• Find out what "tier" your family member's medications fall into. Check the insurance plan's formulary. The tier often determines co-pays, what drug costs go towards deductibles, etc.

• Consider building your own Excel model to estimate costs. The online calculators are helpful, but I don't trust the "black box" nature of them. It's relatively easy in a spreadsheet to figure out estimated costs for the year, based on premium payments, deductibles, and estimated drug costs based on drug tiers. Compare your results to the online calculator. If it doesn't pass the "sniff test" dig in a bit more to see what's going on.

• Contact the insurance company to confirm that the pharmacy is "in network" for the plan you are considering. Some pharmacies get preferred pricing, while others may be in network but offer only standard pricing. In all cases, mail order is usually the cheapest, but isn't practical for individuals in long-term care facilities.

Good luck out there, if you've also fallen down the Medicare open enrollment rabbit hole. The good news is that we have until December to figure it all out. The bad news is that it may take that long to figure it all out!

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In North America, flu season is at our doorstep. This is the time for family members to ensure that older relatives are immunized. It's also essential that family members and caregivers also get the flu vaccine themselves. As a caregiver, every day is busy – you are always balancing your caregiving responsibilities with your work and person lives. No one has time to be sick for days or weeks with the flu. Just as important is preventing seniors from getting the flu. The results of this illness can be devastating for older individuals.

Flu Shots: Are You in the 52%?

The National Foundation for Infectious Diseases (NFID) recently conducted a survey of American adults focused on the flu and attitudes toward vaccination. This research found that only 52% planned to get vaccinated against the flu this season. The other 48% cited several reasons why they weren't going to get immunized. Around half (51%) thought flu vaccines didn't work well, one third (34%) were concerned about side effects, and close to one quarter (22%) were worried the would get the flu from the vaccine. Even among people at greater risk for flu-related complications, 25% said they weren't planning to get a flu shot this year.

Scientific research has proven, however, that the annual flu vaccine is the best preventive tool available for preventing illness, hospitalization, and death from influenza. During the 2017-2018 flu season, immunizations prevented approximately 7 million flu illnesses, 109,000 hospitalizations, and 8,000 deaths. From a caregiver's perspective, it's important to recognize that during most flu seasons, the elderly account for the majority of flu-related deaths and over half of flu-related hospitalizations.

The Flu Is No Joke for Older People

According to the NFID, older adults face several risks if they contract the flu.

• Age. People 65 and older often have weakened immune systems. As a result, their ability to fight off a flu infection may be compromised.

• Heart Disease. Individuals with heart disease are six times more likely to have a heart attack within seven days of contracting the flu. People with heart disease and who have had a stroke are at higher risk for developing serious complications.

• Lung Disease. When people with asthma, COPD, and other lung problems get the flu, they often experience increased lung inflammation which makes their symptoms worse.

• Diabetes. An influenza infection can interfere with management of blood sugar levels. In addition, diabetes can interfere with the body's ability to fight the flu.

What Can You Do to #FightFlu?

There are four simple things that you can do as a caregiver to help prevent you and your loved ones from getting the flu:

1. Get vaccinated yourself. Many workplaces offer vaccines, as do walk in clinics at neighborhood pharmacies.

2. Make sure your older family members are vaccinated. For people 65 and older, high dose and adjuvanted flu vaccines are available. These build a higher immune response.

3. Embrace healthy habits.  These include frequent hand washing, covering coughs and sneezes, and staying home if you become sick.

4. Follow your doctor's advice if you become sick. If you receive a prescription for flu antiviral drugs, be sure to take them as directed.

The flu isn't "just a bad cold" and this is especially true for older adults. Be responsible, get immunized, and #FightFlu for your family, your community, and for individuals who are unable to get immunized due to their age or health issues.

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If your parent has Alzheimer's or dementia, the uncertainty of what new challenges will arise each day can create serious anxiety. Alzheimer's Los Angeles has just launched a ten-episode video series with Caregiver Tips. The series started on September 24 and a new video will be posted online each week, until November 26, 2019.

Currently, two videos are available. Each lasts just three or four minutes, but is full of practical tips for caregivers. The first episode focuses on Caregiver Stress. Courtney Stewart reminds viewers that they must prioritize their wellbeing to avoid burnout. She also offers useful advice on ways to get organized, recommendations for new ways to communicate with individuals with Alzheimer's, and the acknowledgment that caregivers often have to make difficult decisions on behalf of their family members.

The second episode addresses wandering and Stewart provides helpful suggestions for preventing problems from arising, such as putting an identification card in your family members purse or wallet, activating the GPS locator if they have a smartphone, and finding ways to keep loved ones active. The web page for the Wandering video also provides links to additional resources such as the "Getting Lost" tip sheet.

Although the work of caregiving will always be difficult, I found the initial videos from Alzheimer's Los Angeles to be comprehensive and reassuring. If you are just starting on the journey of caring for a family member with a memory disorder, I think these videos are a helpful resource and a good place to get familiar with the issues you may encounter. I'm looking forward to episodes three through ten in the coming weeks.

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As an only child, I have never had the experience of sharing parental caregiving work with a sister or brother. Yet, in talking with friends, it seems like siblings can often be a source of anxiety. In 1994, J. Jill Suitor of Louisiana State University and Karl Pillemer of Cornell University conducted a study of women caring for parents with dementia. They found that siblings were cited as the most important source of interpersonal stress.

In more than one instance, women friends have told me that their brothers feel like their parent doesn't need extra help. That most certainly creates tension between siblings, but also between the children and parent. Let's say that your aging mother has dementia, but is in denial about her condition. When your brothers refuse to acknowledge the reality of the situation, they suddenly become the heroes to your mother and you are the wicked child.

Or perhaps, you feel like your parent would receive the best care at home, while your sibling feels like Mom or Dad should be moved to either assisted living or a skilled nursing facility. How do you find some middle ground?

The Family Caregiver Alliance has several suggestions for addressing family dynamics. These include:

• Obtaining a professional assessment from a doctor, social workers, or care manager. Sharing information from an objective source can help to get people on the same page about the nature of the situation and the urgency.

• Holding a family meeting to discuss your parent's needs. Try to have an unemotional conversation about what each individual can offer, whether that is time or money. If tensions are running high, it may be useful to ask a trusted individual from outside the family to moderate the discussion.

• If the situation isn't urgent, family members may just need time to adjust to the new reality. Sharing information may be a good way to get everyone on the same page over time.

Have you had experience (either positive or negative) dealing with family dynamics, while navigating the waters of elder care? I'd be interested to hear what worked well for others…

On August 8, 2019, the Center to Advance Palliative Care (CAPC) held a webinar which explored changes in awareness, perceptions, and attitudes towards palliative care among adults, patients with a serious illness, caregivers, and physicians. In 2011, CAPC conducted a national phone survey of adults. They repeated this survey in 2019 and added two national online surveys – one with seriously ill patients and caregivers, and one with physicians treating patients with serious illnesses.

The survey found that a top concern among patients and caregivers is that doctors may not provide them with all the treatment options available. Patients and families also worry that they don't have enough control over treatment options. It seems like these concerns may be valid.

Cardiologists and Primary Care Physicians Are Less Comfortable with Palliative Care than Other Specialists

CAPC broke down the physician findings by specialty and segmented responses by non-PCP specialists, oncologists, cardiologists, and primary care doctors. Key findings included the following:

• Cardiologists were the least likely to refer patients to palliative care (63%) compared to 70% of primary care physicians, 81% of non-PCP specialists, and 86% of oncologists.

• Only half of the cardiologists responding to the survey (51%) were comfortable talking with patients and their families about palliative care compared to 63% of primary care physicians, 70% of non-PCP specialists, and 77% of oncologists.

• Less than half of cardiologists responding to the survey (48%) were comfortable determining when their patients needed palliative care compared to 57% of primary care physicians, 66% of non-PCP specialists, and 81% of oncologists.

Given the patient population that oncologists treat, it's not surprising that this specialty was the most comfortable with palliative care. I found it interesting that both cardiologists and primary care physicians were the least comfortable with discussing and referring patients to palliative care. This is consistent with the experience I had with my Dad and his heart disease.

The CAPC research identified various barriers that prevent physicians from referring appropriate patients to palliative care. Some are simply not comfortable talking to patients and families about this option. Others view palliative care as only end of life care. In some cases, physicians don’t understand what palliative care options exist for patients. In others, adequate palliative care services and practitioners aren't available.

What Are Caregivers and Patients to Do?

As CAPC noted during the webinar, clinicians are the gatekeepers to palliative care. If your family member's primary care doctor or specialist falls into the camp of being uncomfortable talking about palliative care, what can be done?

Patients and families who are familiar with palliative care certainly have a leg-up and can proactively raise the topic with healthcare providers. When my Mom broke five ribs, I had to really push the doctors at the hospital to connect us to the palliative care team. It was not an easy ask.

For those who don't know about palliative care, however, it's hard to "know what you don't know." This unfortunately leaves people in the very situation they fear – not understanding all the treatment options that are available to them.

As the American population ages, the medical community needs to get more fluent in the language of palliative care and more open to discussing it. I'd suggest that organizations like the American College of Cardiology and American Academy of Family Physicians should examine why their specialties shy away from this option and implement education to break down the barriers around this important option.

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As I stood in the checkout line at a local candy store, an elderly gentleman ahead of me was talking with the cashier. Even after his transaction was complete, he continued the conversation, not wanting to break the human connection. After he left, the clerk told me that the man's wife of 50 years had recently died. He was a longtime customer and if there was no one in the store, he would stay and talk for a long time, sometimes breaking down into tears. "You are his family now," I told the cashier.

This brief encounter offers a small window into the issues of social isolation and loneliness among older Americans. Scientists distinguish between the two conditions. Social isolation is defined as living alone, while loneliness is defined as the subjective and distressing sensation of being alone. It's possible to be lonely even while being surrounded by others. On the other hand, not everyone who lives alone is lonely.

Social Isolation and Loneliness: Contributors and Consequences

It seems that longevity is a recipe for social isolation and loneliness. Researchers believe that between one third and one half of elderly individuals suffer from social isolation and loneliness. Major contributors to social isolation and loneliness include:

• The death of a spouse

• The changing nature of close relationships – such as when a spouse or partner develops dementia or Alzheimer's disease

• Separation from family

• Loss of mobility and lack of transportation

The physical effects of social isolation and loneliness are profound. The National Institute on Aging suggests that these phenomena are correlated with high blood pressure, heart disease, obesity, and weakened immune systems to mention a few. Scientists also believe that social isolation and loneliness can actually contribute to both cognitive decline and Alzheimer's disease. The Cacioppo Evolutionary Theory of Loneliness hypothesizes that loneliness launches both behavioral and biological processes that contribute to early death in individuals, no matter their age.

Combatting Loneliness: Is the Desire for Independence the Enemy?

Many older people fear a loss of independence. For some, independence is closely tied to having a car and driving. For others, independence means continuing to live in their homes. Yet as we age and live longer, safe driving becomes less attainable. Without adequate transportation, living at home in suburban or rural areas can become almost like a prison.

I recall that my parents were insistent that they stay in their home, after my Dad had a stroke and began the descent into vascular dementia. My mother, who suffers from glaucoma, had stopped driving years before. My Dad was no longer able to drive (even though in his own mind, he was convinced he could). They relied solely on home health aides and me to get them out and about. My Dad attended an adult day program at the local senior center which gave him an opportunity to interact with others. Yet, my Mom refused to participate in other activities at the Senior Center. She became practically a prisoner in her own home – the place where she insisted she wanted to live.

Fast forward to the present, my Mom now lives in a skilled nursing facility which has a diverse activity program. She happily goes to activities from morning until late afternoon. At home she felt that she couldn't go to church – now she attends a weekly Bible study and Sunday worship service. Each Tuesday, Mom goes to a watercolor class. She's found a new interest in bell ringing.

This makes me wonder if family members need to start conversations early with their loved ones about their definition of independence. As people age, traditional narratives around independence no longer work. With my parents, I saw that their view of "independence" led to loneliness and I'm certain it affected their physical health.

Is it possible to redefine independence in ways that combat loneliness? Accepting new types of resources, such as transportation services, community activities, or even moving to places that provide more support, can help older individuals create new ideas about what it means to be independent and also healthy.

Tips for Addressing Social Isolation and Loneliness

Addressing social isolation and loneliness among seniors is both a local and a global challenge. Caregivers may want to consider the following actions, if they feel their loved ones are experiencing isolation:

• Try to determine the root causes of their loneliness. In some happy instances, loneliness is aggravated by an easily solved problem: hearing loss. Investing in hearing aids can help older individuals participate in conversations more easily and not feel embarrassed about continually asking people to repeat themselves.

• Identify community resources that might help. Consult with your local council on aging to find out what sort of transportation resources are available, as well as senior center programs that promote social interaction.

• Explore why your family member may be resistant to activities that could increase social interaction. Common reasons include fear of rejection or distrust of strangers. If your family member is apprehensive, for instance, about taking the town's senior bus to the grocery store or doctor's office, see if you can accompany them the first time. The same goes for senior center activities – perhaps bring your family member there and explore the options together.

• Have a conversation about what being independent means to your loved one. In a non-emotional way, explain the health issues that are caused by loneliness. Discuss how our views of independence change over time.

On a more global level, communities can take steps to address social isolation and loneliness among their older populations. Many towns have strong Councils on Aging. In addition, the "dementia friendly" and "age friendly" community movements are gaining momentum.

I recently ran into the director of the adult day program in my town and told her about the gentleman in the candy store. She said our town is focused on becoming an age friendly community and businesses would be encouraged to share information about the Senior Center and other resources with customers like him. This gives me hope that loneliness in our communities can be recognized and addressed.

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Your mother with dementia has asked the same question for the tenth time in an hour. In a moment of weakness, you answer in an irritated tone. The next thing you know, your Mom is angry and then starts crying. You feel horrible…

Emotional contagion. It sounds like a plague or epidemic. It occurs when people mimic the emotions that they see in others. The science of emotional contagion has discovered that this is a known phenomenon in humans and other primates. The part of the brain called the amygdala is attuned to non-verbal cues. Mirror neurons also play a role, enabling people to reflect emotions.

Researchers have found that emotional contagion is increased in individuals with mild cognitive impairment (MCI), as well as Alzheimer's disease. Scientists at the University of California San Francisco's Memory and Aging Center conducted a study in 2013 which showed that emotional contagion increases linearly as MCI and Alzheimer's disease progresses.

Emotional Contagion and the "Caregiver's Mask"

In my own interactions with my Dad, I saw emotional contagion in action and it made me reconsider how I communicated with him. Our relationship shifted from one of open communication based on honesty to something different. It felt like I had to put a filter between us and carefully consider what I told him and how I conveyed it.

I was recently reading the book "Myths of Leadership" by Jo Owen. This sentence resonated with me: "When things go awry, how do you react then? It's at these times you need to wear your mask of leadership: project the style which you want your team to follow."

I believe that this principle can be translated to the world of caregiving. When we wear the "caregiver's mask," we project the emotions we want our loved ones to experience and try to minimize their distress, while suppressing the frustration, sadness, or anger that we may be feeling inside.

The caregiver's mask is a double-edged sword, however. We use it to prevent agitation in our family members, but I think caregivers must also recognize the personal toll it can take. I found it painful to see my relationship with my Dad change – I could no longer share my problems and concerns with him and ask for his advice. I couldn't be open about my emotions.

Tips for Caregivers

I like Dr. Andrew Budson's recommendations for communicating with people with dementia. In particular, I like two points:

• Remember that the truth is relative. What you perceive as the "truth" may not be what your loved one sees as the truth. Try to see things from their perspective and operate in their reality. There's no value in imposing your world onto a person who no longer understands that realm.

• Live in the moment. In general, this is a good principle for everyone, regardless of their health. In the context of caregiving, it can be frustrating to discuss current events or the news with someone with dementia. A better approach is to find a topic or activity that is immediate – for instance, I used to bring library books with photos of animals or nature scenes when I visited my Dad. We could look at the pictures and talk about them without stress.

I would also add that although emotional contagion has a negative side, it also has a positive aspect. Just as individuals with dementia or Alzheimer's are upset when they see people exhibit negative emotions, they can be delighted by positive emotions in others. I used to joke around with my Dad and sometimes act silly to make him laugh.

Addressing the impact of emotional contagion isn't limited to individuals with memory issues. Caregivers must also look in the mirror and take care of themselves. It can be emotionally draining to suppress your emotions and to convey calmness and reassurance. Find a trusted relative or friend to confide in. Caregiving is difficult work, especially when it comes to lost relationships. Don't be afraid to seek help for yourself from a therapist or mental health professional.

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If you accompany your parent or family member to doctor's appointments, you may have felt at times like the healthcare system simply isn't optimized for the needs of older patients. This is by no means a criticism – primary care practices and specialists alike see a wide range of patients and they must serve them all.

However, it's impossible to avoid the demographic reality. The U.S. Census' National Population Projections 2017 estimate that by 2035, adults over 65 will outnumber children. In response, The John A. Hartford Foundation, the Institute for Healthcare Improvement (IHI), the American Hospital Association, and the Catholic Health Association of the United States are joining forces to proactively promote age-friendly health systems.

What is an Age-Friendly Health System?

The foundation of an age-friendly health system is the "4Ms Framework." The 4Ms are:

1. What Matters. Age-friendly health systems align care with each older adult's specific health outcome goals and care preferences across care settings. This includes, but isn't limited to, end-of-life care.

2. Medication. Age-friendly health systems strive to use "age-friendly" medications across care settings that don't conflict with the other 3Ms.

3. Mentation. Age-friendly health systems prevent, identify, treat, and manage dementia, depression, and delirium across care settings.

4. Mobility. Age-friendly health systems focus on mobility, so older patients can move safely every day to maintain function and to continue to do What Matters for them.

To be effective, the 4Ms must be implemented together and they must be practiced reliably across all older patients, in all settings, and in every health system interaction. Age-friendly health systems accomplish this in two ways. They assess – that is, they understand the 4Ms for each older patient in their care. They also "act on" – they integrate the 4Ms into older patients' care plans.

Building Momentum for Age-Friendly Health Systems

The organizations spearheading the age-friendly health systems movement have a goal to implement the 4Ms framework at 20% of U.S. hospitals and medical practices by the end of 2020 – this represents 1,000 hospitals and 1,000 primary care practices.

Five leading health systems volunteered early in the project and their testing resulted in the evidence-based 4Ms framework for age-friendly care. These pioneering systems include:

• Anne Arundel Medical Center

• Ascension

• Kaiser Permanente

• Providence St. Joseph Health

• Trinity Health

In September 2018, the IHI Age-Friendly Health Systems Action Community Wave 1 was launched, comprised of 131 sites of care from 73 organizations. Action Community Wave 2 began in April 2019 and included 153 sites of care from 94 organizations. Work is now underway to recruit organizations for the next Action Community.

Age-Friendly Health System Innovations

During a webinar on August 1, 2019, organized by the American Hospital Association, Angela Fox, Director of Business Development and Implementation for Providence Health & Services, highlighted a variety of tactics that her organization has used to cultivate an age-friendly health system.

One of the most interesting is the creation of primary care “geriatric champions.” The organization's Geriatric Mini-Fellowship program is a four-week program. Physicians and nurse practitioners interested in becoming a geriatric champion attend all-day classes taught by a geriatrician, a geriatric nurse practitioner, a Doctor of Pharmacy, and guest faculty. Each week, the program focuses on one of the 4Ms. The health system now has 12 geriatric champions (11 MDs and 1 nurse practitioner) in 12 clinics serving 28,000 seniors.

The health system is also strengthening the "What Matters" conversations that occur between providers and patients. The organization has created a "What Matters Conversation Guide" with resources, guiding questions, and steps for starting the dialogue.

Implications for Seniors and Caregivers

The age-friendly health systems movement is encouraging both for older patients, as well as their caregivers. I, for one, would have welcomed a geriatric champion when I was helping to care for my Dad. A few recommendations for caregivers include:

1. Inquire whether your family member's primary care practice is aware of the age-friendly health systems model and share information with them, if they aren't.

2. Ask your family member if they would be willing to proactively start the "What Matters" conversation with healthcare providers, even if the health system isn't officially "age-friendly."

3. Engage healthcare providers in a dialogue around your family member's medications. Are they appropriate for your family member's life goals, mobility, and cognitive well-being?

Grassroots encouragement from patients and caregivers can only build additional momentum for this important healthcare trend.

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If you are a caregiver for a family member with dementia, you may be all too familiar with the following feelings:

• Uncertainty about where to turn for community-based programs

• Not knowing how to handle issues related to dementia, like medications, challenging behaviors, medications, or advanced care planning

• Sensing that few, if any, of your family member's healthcare providers know how to help you, as the caregiver

All of these factors can lead to high levels of stress, as well as the feeling that you are alone. The reality, however, is that your experience is all too common. The Alzheimer's Association's 2019 Alzheimer's Disease Facts and Figures highlighted that unpaid caregivers provide 83% of total care to individuals with dementia. In 2018 alone, 18.5 billion hours of care valued at $234 billion were provided by family, friends, and other unpaid caregivers.

Fortunately, healthcare systems and various not-for-profit foundations and advocacy organizations are exploring more comprehensive approaches to dementia care which provide resources for caregivers that can reduce their stress.

On July 30, 2019, Resources for Integrated Care aired the webinar, "Diagnosing and Treating Dementia – Current Best Practices." During this event, experts discussed examples of community-based and health system-based comprehensive care programs targeted at individuals with dementia, as well as their unpaid caregivers.

UCLA Alzheimer's and Dementia Care Program

Dr. David Reuben, Chief of the Division of Geriatrics at UCLA's David Geffen School of Medicine and Director of the UCLA Alzheimer's and Dementia Care (ADC) Program noted that over half of unpaid caregivers develop depression. Yet, the more empowered that caregivers are with relevant knowledge and resources, the better care they are able to provide to family members or friends.

The UCLA ADC Program uses a co-management model, where nurse practitioners serve as Dementia Care Specialists (DCSs). They work collaboratively with the patient's physician. The Dementia Care Specialists don't take responsibility for the patient's primary care, but they work with physicians to provide dementia care. They take on duties, such as:

• Conducting in-person needs assessments

• Developing customized dementia care plans

• Monitoring how the care plan is working for patients and caregivers, and revising as necessary

• Providing access to patients and caregivers 24 hours a day, 365 days a year

From a personal perspective, I would have welcomed such a program when I was caring for my Dad. It felt like the primary care physician's office dealt with such a wide variety of patients that there was no resource that could help me navigate the very specific needs of an individual with dementia.

After one year participating in the UCLA ADC Program, caregivers reported dramatic improvements in their confidence and well-being. For example:

• Over half (60%) indicated they were better able to find community-based services, compared to 20% before the program

• Over half (62%) were confident they could handle dementia-related issues, compared to 32% before the program

• Over three quarters (78%) reported that they knew where to turn to get answers, compared to 35% before the program

• Over three quarters (76%) indicated that they had access to a healthcare professional who helps, compared to 25% before the program

Community-Based Programs: Best Practice Caregiving

Another approach to comprehensive dementia care is the Best Practice Caregiving initiative. The Benjamin Rose Institute on Aging and Family Caregiver Alliance are collaborating on this project which will provide an online compilation of evidence-based dementia caregiving programs. This initiative is currently in beta testing, but is expected to launch in Fall 2019.

One of the programs included in the Best Practice Caregiving initiative is BRI Care Consultation. This evidence-based, care coaching program helps professionals deliver cost-effective assistance and support to individuals with chronic conditions, as well as to family caregivers. Services are provided by phone and email.

BRI Care Consultation uses a three-part framework to structure services:

1. Assessment. During this phase, professionals help families identify care-related challenges.

2. Action Plan. The action plan is designed to help families move toward solutions. Examples of action steps include contacting service agencies, reading consumer-ready information, or asking other family or friends for caregiving assistance.

3. Ongoing Support. As the care situation changes, coaches provide ongoing help.

Conclusion

As a former caregiver, I'm encouraged that health systems, as well as funders like The John A. Hartford Foundation, Archstone Foundation, and The Retirement Research Foundation, are investing in programs that take into account caregiver needs. Alzheimer's and dementia aren't going away anytime soon. However, reducing the anxiety and stress associated with caring for a family member with dementia could go a long way towards decreasing burnout.

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The numbers of Americans with dementia and Alzheimer's disease is growing, due to greater longevity and the aging of the Baby Boomers generation. The Alzheimer's Association recently released the 2019 Alzheimer's Facts and Figures report. This publication indicates that today 5.8 million Americans have Alzheimer's dementia and 10% of Americans 65 and older have this condition. This statistic doesn't take into account individuals with other forms of dementia. With the number of Americans in the 65+ age group expected to grow to 88 million by 2050, we can expect that the number of individuals with Alzheimer's and dementia will increase by at least 50%.

At most consumer-oriented companies, ears would perk up in response to a customer segment comprised of millions of potential buyers. Which begs the question – could serving individuals with dementia and Alzheimer's be a competitive differentiator for companies?

Dementia Friendly Communities & Businesses

Dementia Friendly America (DFA) is a national network that is working to ensure that American communities are prepared to support both residents with dementia and caregivers. "Dementia friendly" communities have several characteristics, including:

• Specialized residential options offering memory loss supports and services

• Health and long-term care that promotes early diagnosis and specialized care and support throughout the care continuum

• Transportation, housing, public spaces

• Dementia-informed local government, emergency planning, and first response

• Welcoming and engaging communities of faith

• Dementia aware and responsive legal and financial planning

• Dementia aware and responsive banking practices

• Businesses that foster customer service and environments that support customers with dementia and caregivers

DFA's Sector Guides offer guidelines for creating a dementia friendly community. These guides highlight best practices that businesses could use to better serve consumers with dementia, while at the same time, differentiate themselves in the market. Imagine if you were a caregiver and you knew that the local bank, barber, and grocery store would use dementia-friendly communication skills when your family member came in. The customer service staff would speak slowly, asking one question at a time, smile and make eye contact, and avoid embarrassing the customer.

The DFA Banking Sector Guide recommends that financial institutions serving clients with dementia understand red flags that may point to problems with money management, be on the lookout for signs of financial abuse, and engage clients in conversations early about legal documents like powers of attorney and contacts who make decisions on their behalf, if necessary. Imagine the peace of mind that caregivers and older clients alike would have, knowing that their bank understood their unique situation and was looking out for their best interest.

The DFA Business Sector Guide suggests that businesses provide quiet places for customers to conduct transactions, without distractions that could be overwhelming. Signage and pathways to restrooms and other important spaces should be clear and easy to understand. In the restaurant sector, Purple Table Reservations has already adopted these principles to serve customers living with dementia, Alzheimer's, autism, PTSD, traumatic brain injuries, hearing or vision impairment, or other conditions that could benefit from a predictable restaurant environment. Purple Table restaurants have serving staff who have been trained to understand different needs.

Living with dementia and Alzheimer's and caring for family members with these conditions is never easy. I remember as a caregiver being so appreciative when different stores or businesses treated my Dad kindly and with respect. It definitely created a positive customer experience and made me more loyal to those brands. Are marketing programs targeted at dementia and Alzheimer's families the wave of the future? I think it might be.

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When my Dad was first diagnosed with dementia, my Mom and I committed to keep him at home as long as possible. This, of course, meant routine trips to the primary care physician and other specialists. I soon came to dread lab tests, ranging from routine blood draws to urine specimens.

Even when Dad was healthy, it was challenging for phlebotomists to draw blood successfully. Fast forward to the dementia years and more than once, he ended up crying in the lab chair while the technician poked and prodded him with a needle. Urine samples were perhaps less traumatic for him, but just as traumatic for me. I was utterly uncomfortable helping my own father with such a personal task.

Over the years, I adopted five techniques to try to get both of us through with a minimum of trauma:

1. Communicate clearly with the lab technicians. When we went to the lab for blood work, I always went in with my Dad. I told the technicians upfront that he always had difficulty with blood draws, both physically and emotionally. I learned to ask them to use the tiniest, pediatric needles.

2. Find an ally. I quickly learned who the best phlebotomists were and I made friends with them. "Monica" was an angel who had a gentle manner and usually could draw blood from Dad on the first try. I found out what her schedule was and made sure to time our lab visits to coincide with her schedule. People feel honored when they are requested by name. When we had to see other technicians, they were quick to point out that they were "as good as Monica."

3. Explain your situation to the nursing staff. The nurses in the primary care physician's office empathized with my plight with regard to assisting with urine test. I asked them politely if someone else could help. They usually found a man nurse who put my Dad at ease and helped him. As a general rule, most primary care practices deal with a wide range of patient ages. They may not be attuned to the needs of older patients. So, don't be surprised if you need to ask for special help. All they can say is no, and most likely they will say yes.

4. See if you can collect the specimen at home. Sometimes as a last resort, I would ask if we could do the urine test at home and bring the specimen back. I often asked for a "hat" – this plastic device fits over the toilet. For people with decreased manual dexterity or cognitive abilities, it's an easier solution than juggling small cups or jars. While the situation at home was still awkward, it was lessened somewhat since my Mom could help.

5. Focus on caregiving in a respectful way. While handling the health affairs of an elderly parent with dementia may feel like caring for a child, it's important to remember that you are still your mother's or father's child. Strive to treat your parent with loving respect, while quietly navigating the details needed to get them the care they need – either in the lab or in the doctor's office. Don't talk about your parents to healthcare professionals as if they aren't there. Make an effort to include them in the conversation, even if they don't fully comprehend what is going on.

Even though declining health may have changed your parent's capabilities, it hasn't changed their humanity. As you help them your mother or father navigate the healthcare system, you can be the bridge to ensure that they have quality, human interactions with health professionals.

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I was recently speaking with a friend whose mother is in her early 80s. She lives across the country from her Mom and is starting to become concerned about some changes that she's detected in her mother's behavior. It begs the question, if your Mom or Dad seems forgetful, should you be worried about dementia?

What's "Normal" Forgetfulness?

Some forgetfulness with age is to be expected. The National Institutes of Health has identified five behaviors that may be indicators of more serious memory issues. These include:

• Engaging in poor decision-making a lot of the time

• An inability to handle monthly bills

• Uncertainty about the date, time, or time of year

• Trouble engaging in a conversation

• Frequently misplacing things, then not being able to find them

The American Society on Aging notes that other symptoms in conjunction with forgetfulness may be a cause for concern. These include changes in personality, trouble handling "activities of daily living" (such as bathing, dressing, or eating), and unexpected reactions to stress or fatigue (such as forgetting who family members or friends are, or forgetting familiar information).

How Is Dementia Diagnosed?

If you and your family member is concerned about dementia, a good place to start is with a visit to the primary care physician. The doctor will gather information about medical history, conduct a physical exam, and perform tests related to balance, sensory responses, reflexes, and cognitive abilities. It may be also helpful to visit a neuropsychologist and geriatric psychiatrist for further evaluation.

What’s a Caregiver to Do?

Medical consultations are most likely just the first step in a longer journey. If your mother or father is showing signs of “normal,” aging-related forgetfulness, you still may want to put certain structures in place to help them deal with this. For instance, you might volunteer to take over paying the bills or set up a system to remind your parent to take their medications on time.

If doctors suspect dementia, it’s never too early to start a conversation with your parent about what they’d like their future to look like. Understanding their wishes will help you as you begin planning for their longer-term care.

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The Centers for Disease Control and Prevention has estimated that 51.4 surgical procedures were performed in 2010. Of those, over one third (38%) were on patients age 65 or older. As the U.S. population ages, the number of surgeries recommended for older patients will only increase.

Let's say that your elderly family member is of advanced age and perhaps they are already suffering from various health issues. If the doctor recommends surgery, what do you do? The reflexive response may be "yes," since we assume that doctors know best. But, do doctors always consider the unique characteristics of older patients when suggesting invasive procedures?

JAMA’s Surgical Decision-Making Framework for Older Patients

Earlier this year the Journal of the American Medical Association (JAMA) published a helpful surgical decision-making framework targeted at older patients. It is comprised of three basic questions:

1. Will surgery prolong my life?

2. How will surgery affect my quality of life?

3. Will surgery allow me to preserve my independence?

I wish that I had access to this framework before my 83-year old father had aortic valve replacement and coronary bypass surgery. Doctors often classify outcomes as "successful, " if they result in prolonged life for a patient, regardless of the resulting quality of life or impact on independence. Our family's deliberations might have been very different, if we had communicated to doctors that our definition of a "successful outcome" was only possible if we could answer "yes" to all three questions.

The ACS Geriatric Surgery Verification Program

Fortunately, the medical community is beginning to recognize that a surgical procedure that might be "routine" for a healthy person of 40 or 50, may be very different for an older adult. The Coalition for Quality in Geriatric Surgery is a project sponsored by the American College of Surgeons and the John A. Hartford Foundation. The goal is to develop standards and outcome measures which recognize the unique physiological and social needs that aging surgical patients have.

Finalized standards will be released in July 2019 at the ACS Quality and Safety Conference. Looking ahead, hospitals will have the opportunity to participate in a voluntary initiative called the ACS Geriatric Surgery Verification Program.

Tips for Caregivers

1. Use the JAMA surgical decision-making framework. Before speaking with the medical team, have an honest discussion to clarify what quality of life means for your loved one. In this conversation, you should also explore how important independence is to your loved one. Would they be willing to accept limited independence in exchange for prolonged life? These are tough discussions, but they are one of the only ways to ensure that medical treatment is in alignment with your loved one's wishes.

    

2. Communicate with the clinical team about your family member's personal goals. Be prepared to push the doctors for clear information about whether their proposed treatment is consistent with these goals. I've found that the default mindset for many physicians is to treat, no matter what the outcome.

    

3. If your family member opts for surgery, look for a hospital that has adopted the ACS Geriatric Surgery Verification Program. Since this initiative is in its early stages, it may be some time before implementation is widespread. However, it's still worth asking your hospital if they are aware of the program.

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