A Publication of the American Counseling Association

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By Bethany Bray

Licensed professional counselor (LPC) Ruth Drew oversees the Alzheimer’s Association’s 24-hour helpline, which offers support to those facing the challenges of dementia and Alzheimer’s disease, including families and caregivers. The fact that the helpline receives more than 300,000 calls each year hints at the heart-wrenching issues that accompany a dementia diagnosis, not just for the individual but for the person’s entire support system.

“We receive a wide range of questions, from someone worried about the warning signs of cognitive decline or dealing with a new diagnosis, to an adult son whose mother didn’t recognize him for the first time, or a wife wondering how to get her husband with Alzheimer’s to take a bath. Whatever the reason for the call, we meet callers where they are and endeavor to provide the information, resources and emotional support they need,” says Drew, director of information and support services at the Chicago-based nonprofit.

Professional counselors are a good fit to help not only individuals with dementia and Alzheimer’s, but also those in their care networks, Drew says. Whether counseling individuals, couples or even children, the far-reaching implications of dementia mean that practitioners of any specialization may hear clients talk about the stressors and overwhelming emotions that can accompany the diagnosis.

“People diagnosed with Alzheimer’s and other dementia diseases are going through profound life changes — coping with the realities of an incurable disease that is stealing their abilities and their memories. Counseling offers a place to process the losses, develop ways to cope, and find meaning in their current situation,” Drew says. “Similarly, family members face emotional, physical and financial challenges when they care for someone with Alzheimer’s. It helps to have a safe place to process feelings, get support, learn to cope with present realities, and plan for the future.”

A growing need

“Dementia isn’t a normal part of aging. It just happens that most dementia patients are older,” says Jenny Heuer, an LPC and certified dementia practitioner in Georgia who specializes in gerontology. “There is this stigma that just because you’re getting older, you’re going to get dementia.”

The Alzheimer’s Association (alz.org) defines dementia as “an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities.”

Although many people associate dementia with Alzheimer’s, there are numerous forms of dementia, and not all are progressive. Dementia can be reversible or irreversible, depending on the type, explains Heuer, the primary therapist in the geriatric unit at Chatuge Regional Hospital in Hiawassee, Georgia. Alzheimer’s, an irreversible, progressive form of dementia, is most common, followed by vascular dementia, which can occur after a stroke. Forms of dementia can also co-occur with Down syndrome, Parkinson’s disease, Huntington’s disease and other diagnoses. Research has also linked moderate to severe traumatic brain injury to a higher risk of developing dementia or Alzheimer’s disease years later.

Heuer, a member of the American Counseling Association, recalls a client she counseled who was diagnosed with Alzheimer’s prior to age 62. She had lived with a husband who was violent and physically abusive toward her, and the client’s caregivers wondered if she had suffered a brain injury that contributed to her early onset Alzheimer’s.

Heuer notes that other conditions can lead to an assumption or misdiagnosis of dementia. For example, a urinary tract infection (UTI), if left untreated, can progress far enough to cause confusion in a client. Once the UTI is diagnosed and treated, the confusion can dissipate. In addition, excessive alcohol use, depression, medication side effects, thyroid problems, and vitamin deficiencies can cause memory loss and confusion that could be mistaken for dementia, according to the Alzheimer’s Association.

“There’s so many [other] things to rule out,” Heuer says. “Doctors try to rule out every other health issue before they diagnose dementia.”

The complicated nature of dementia only reinforces the need for counselors to do thorough intake evaluations and to get to know clients holistically, Heuer says. Counselors should ask clients about anything that has affected or could be affecting their brain or memory, including medication use, stress levels, past physical trauma or brain injury, depression, sleep patterns, exercise and other factors.

The World Health Organization (WHO) reports that roughly 50 million people worldwide currently have dementia, and nearly 10 million new cases develop each year. Alzheimer’s disease-related dementia may contribute anywhere from 60% to 70% of that overall number, according to WHO.

Alzheimer’s is the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention. The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. A recent report from the nonprofit estimated that 5.7 million Americans of all ages were living with Alzheimer’s-related dementia in 2018, the vast majority of whom (5.5 million) were 65 and older. Close to two-thirds of Americans with Alzheimer’s disease are women, according to the association.

These numbers are only expected to increase as the U.S. population ages and the baby-boom generation reaches retirement and later life, Heuer notes.

The U.S. Census Bureau projects that in the year 2034, the number of Americans 65 and older will, for the first time in history, eclipse the nation’s number of youths under age 18. By 2060, close to one-quarter of Americans will be 65 or older, and the number of people older than 85 will have tripled.

“Aging issues hit home for counselors across the board,” Heuer says, “because we are all aging, and many are caring for aging parents. … I invite other counselors to join me in working with this population. [Alzheimer’s] is the sixth-leading cause of death. That sounds very morbid, but it’s only going to go higher. More and more people will be diagnosed. With the aging baby-boom population, there’s someone around every corner [who is] going to be impacted by this disease.”

Caring for the caregivers

There is an obvious emotional component to caring for a loved one affected by memory loss and the other aspects of dementia, but there is also the burden of assuming management of the person’s practical tasks, such as financial planning and keeping up with medical appointments. The stress of it all can affect the person’s entire network, says Phillip Rumrill, a certified rehabilitation counselor in Ohio whose professional area of expertise is clients with disability, including dementia.

“Dementia affects the whole family system, and possibly for generations. The person [with dementia] needs help, yes, but [so do] their spouse, children and entire family system. That’s critically important [for counselors to be aware of] when you’re dealing with dementia,” says Rumrill, a member of the American Rehabilitation Counseling Association, a division of ACA. “There is a tremendous amount of burnout that comes with being a dementia caregiver.”

Witnessing a loved one’s memory and abilities decline can cause caregivers to feel sad, frustrated, exhausted, overwhelmed, hurt, afraid and even angry, says Matt Gildehaus, an LPC who owns Life Delta Counseling, a private practice in Washington, Missouri.

“The caregivers and loved ones are often the hidden victims of dementia. They can become completely overwhelmed as the role becomes all-encompassing,” says Gildehaus, who counsels adults facing a range of challenges, including aging-related issues and dementia. “Taking care
of someone can easily become an identity that gets affirmed and reinforced until it comes at nearly the complete expense of self-care. When being the caregiver for someone with dementia overtakes their life, the caregiver’s emotional and physical health frequently begin to decline.”

Each of the counselors interviewed for this article asserted that clinicians should, first and foremost, emphasize the importance of self-care with clients who are caregivers to individuals with dementia. Counselor clinicians can ask these clients what they are doing for self-care, help them establish a self-care plan if needed, and connect them with local resources such as support groups and eldercare organizations.

It is also important to encourage clients to ask for help from others when they are becoming overwhelmed, says Rumrill, a professor and coordinator of the rehabilitation counseling program at Kent State University in Ohio, as well as founding director of its Center for Disability Studies. If clients mention having a loved one with dementia, counselors should listen carefully to make sure these clients are taking care of themselves and processing their feelings related to the experience.

Connecting clients to support groups and other resources can be vital because many families feel lost and isolated after their loved one receives a dementia or Alzheimer’s diagnosis, Drew notes. “This isolation can increase throughout the journey as caregiving demands intensify, especially if they don’t know where to turn for help,” she says.

Families may also experience emotions that parallel the grieving process as they witness the progressive loss of the person they knew. Caregivers might even find themselves with hard feelings emerging toward their loved one, particularly as they try to handle the frustrating behavior challenges that Alzheimer’s and dementia can introduce.

“The disease can be very deceiving because one day the person may be very clear, and another day they’ll be confused. Caregivers can feel [the person is] doing things on purpose, just to push their buttons,” Heuer says. “I often ask if the person was aggressive or called [the client] names before they were diagnosed. Most often, the answer is no. Then I explain that it’s the disease, not the individual” prompting the behavior.

Gildehaus, a member of ACA, has seen similar frustrations among clients in his caseload. “I often help caregiver clients by providing a safe place for them to share the things they don’t feel they can share with family and friends,” he says. “For caregivers, there are three tools I focus on using: therapeutic silence, empathic listening, and normalizing what they often describe as ‘terrible thoughts.’ These … can be ideas like, ‘They make me so angry,’ ‘I dread going to the nursing home some days’ or even ‘Sometimes I secretly hope they don’t live for years like this.’”

Rumrill notes that clients caring for a loved one with dementia may need a counselor’s help to process how the disease has disrupted roles within the family. He experienced this personally when caring for his grandmother, who lived with dementia for years before passing away in 2009 of stomach and liver cancers. Rumrill, who held power of attorney for his grandmother’s financial affairs, had to adjust to taking care of someone who had taken care of him throughout his life. It felt like a role conflict to have to begin making decisions on his grandmother’s behalf while still trying to respect her wishes, he recalls.

“It’s changing roles: They used to take care of you, and now you take care of them,” Rumrill says. “There is an odd juxtaposition when a child is telling a parent what to do. It can be hard [for the older adult] to accept when it’s coming from the younger generation. The roles have switched, and no one got the memo.”

Counseling sessions for couples and families can also serve as safe spaces to talk through the stressors and disagreements that come with caregiving, Rumrill and Heuer note. Counselors can serve as neutral moderators to facilitate conversations about tough subjects that clients may be fearful of or avoiding outside of sessions. This can include talking over logistical or financial issues, such as dividing caregiving tasks or assigning power of attorney, and harder conversations such as when and how to move a loved one to a care facility.

Counselors who work with couples should be aware of the intense stress that providing care for someone with dementia can put on relationships, Rumrill adds. Home life can be turned upside down when one member of a couple’s time and attention are devoted to caregiving. This is especially true if the family member with dementia moves into the home. Tasks that used to flow easily, such as unloading the dishwasher or taking the kids to sports practices, can become points of contention. Challenges that the couple successfully navigated before — from budgeting to parenting issues — can become more pronounced and complicated as caregiving puts extra strain on the couple’s time, emotions and finances, Rumrill says.

It’s an unfortunate reality, but counselors working with clients who have dementia or their families also need to be watchful for signs of elder abuse, including financial abuse, Rumrill says. Dementia patients and their caregivers are also at higher risk for issues such as depression, anxiety, suicidal ideation, and substance use and abuse (which may be used as a coping mechanism).

Listen and validate

Clients who have dementia can get a variety of needs addressed in counseling sessions — needs that will change as the dementia progresses.

In the early stages of dementia, counselors can help clients process their feelings and fears about the diagnosis, as well as work toward accepting and adapting to the changes that are coming. In the middle to latter stages, clients may benefit more from reassurance and validation from a counselor, as well as occasional redirection and calming techniques.

Heuer recalls a client whose husband had recently been placed in a memory care facility because of Alzheimer’s disease. The client — whom Heuer calls “Anne” for the purposes of this example — was dealing with pre-existing depression, which was the initial focus of the counseling sessions. Heuer and Anne also discussed Anne’s relationships with family members and the various changes she was facing, which included moving because of her husband’s placement in the memory care facility.

According to Heuer, Anne harbored a great fear of losing her own memory, and over time, her memory did in fact begin to deteriorate. She would acknowledge the decline in counseling sessions as she and Heuer talked about its impact on Anne’s life. Later, as Anne’s dementia progressed, Heuer shifted her work to focus more on fostering Anne’s feelings of safety and connection. “The interesting part of working with Anne is she never mentioned the word dementia. I heard about her diagnosis from family and caregivers,” Heuer recalls.

“As her memory declined, I would reflect her feelings [in counseling],” Heuer says. “Then there were sessions where Anne would spend the majority of the time talking about how she had been traveling on a train and had just gotten off the train. Frequently, she would share the story as if it was the first time she was telling it to me.” Heuer says one of the best suggestions she has been given for working with clients with dementia is to show them the same level of patience and attention regardless of whether they are telling her a story or sharing a memory with her for the first time or the 10th time.

“Anne also had hallucinations [in the latter stages of dementia],” Heuer says. “She had moments of clarity where she knew they were hallucinations and questioned her own sanity. I had no magical cure or answer. I would try and imagine how I would feel if this were happening to me and [then] tapped into empathy and the core foundation of person-centered therapy.”

Most of all, individuals with dementia need a counselor to simply “be present and listen,” adds John Michalka, an LPC with a solo private practice in Chesterfield, Missouri. He specializes in working with clients who have mood disorders related to chronic illness, including dementia.

“Patients living with dementia often tell me they just need their loved ones to stop nagging them and making them feel like the things they are doing are intentional,” says Michalka, an ACA member who has personal experience caring for a loved one with dementia. “The patient isn’t forgetting on purpose. The patient has enough to deal with without being made to feel like a burden as well. It always amazes me how simple and unselfish the patient’s request is when it comes to what they need: just simple love, understanding and patience.”

The following insights may be helpful for counselors who treat clients with dementia. Some of the guidance may also be relevant to share with clients who are family members of or caregivers to a person with dementia.

>> Correcting versus agreeing: Patients in the memory care unit where Heuer works sometimes come up to her and say, “It’s so good to see you again!” even though they have never met her before. Over time, she has learned to read clients and think on her feet to respond appropriately to remarks that aren’t based in reality.

For caregivers, deciding whether to correct a person with dementia or go along with what the person is saying can become a daily or even moment-to-moment struggle. Heuer says her decision to validate or correct is often based on how likely the person is to become agitated or aggressive. But empathy also comes into play. “I try to put myself in their shoes. How would I feel if I were seeing a friend I hadn’t seen in a while? It really comes down to meeting them in their emotions.”

Some clinicians may call the practice of validating or going along with a client with dementia “therapeutic lying,” Heuer says, but “I call it ‘molding the information’ and doing what it takes for them to feel calm and safe. …We have to adapt to them because they are not able to adapt to us. It is as if they have a different inner world, and we have to meet them in their world.”

Michalka says he also finds validation therapy helpful for easing anxiety in clients. With clients who are dementia caregivers, he often emphasizes that what is going on in the mind of the person with dementia is their reality.

He recalls one client who was beginning to panic because they saw someone in their room. “There was no one in the room, but the patient’s experience or perception of a stranger in their room was real,” Michalka says. “A natural reaction for most caregivers would be to correct the patient. In doing so, we are challenging the patient’s perception of reality. This typically will only escalate the patient’s anxiety and, in doing so, escalate the loved one’s or caregiver’s anxiety.

“Imagine if you saw a stranger in your room, and when you [try] to tell someone, they proceed to tell you, ‘No, there [isn’t].’ Would you not become more and more agitated as you try to convince them [and] they continue to challenge your reality? Instead, we should validate their experience by asking if that stranger is still in the room. Then, one would empathize with the patient by validating how scary that must have been, but now the stranger is no longer there and they are safe. After which, the patient’s attention should be redirected to a more pleasant thought or situation.”

>>  Considering the whole person: Working with clients with dementia “takes you out of your comfort level because you have to become very creative in how you interact with [them]. It’s not the type of counseling that you learn in a textbook,” Heuer says. “Your ability to counsel and work with these individuals goes well beyond the knowledge you gain about counseling in your master’s [program].”

Heuer encourages clinicians to learn more about who clients were before their dementia diagnosis — what they did for a career, what their hobbies were, their likes and dislikes. Counselors can ask clients directly for this personal information or seek details from their family members. Learning these personal details can help to better inform counselors’ interventions and help form stronger connections with clients, Heuer says. “Tapping into what made them happy as a human being [without dementia] may be therapeutic for them,” she adds.

For example, a client who loves baseball may be comforted and more responsive while watching a televised ballgame or flipping through an album of baseball cards with a counselor. A client who was a teacher or a banker might find comfort writing in a ledger. Even clients with late-stage dementia can respond when their favorite music is played, Heuer notes.

She recalls one client who had previously worked in business and would sometimes think that his caregiver was his secretary. When this happened, the caregiver would “take notes” for him by writing on paper. “It doesn’t have to make sense, but to them it may make sense,” says Heuer, whose doctoral dissertation was on the lived experiences of individuals with early stage Alzheimer’s disease.

>>  Redirecting: When working with clients in the middle to latter stages of dementia, techniques that prompt a change of focus are invaluable. Redirection can keep these clients from becoming upset or escalating to aggression, Heuer says. For caregivers, this technique might involve engaging the person in an activity that they used to enjoy or simply asking for help with a task, such as folding laundry or setting the table.

“Redirection really comes into play when an individual is exhibiting behaviors such as agitation, fear, anger or paranoia,” Heuer explains. “Normally, there is something in their environment that is triggering them. An example we often observe and hear about is an individual [who] is wanting to go home. In essence, they want to feel safe and are looking for something familiar. Redirection is a technique that refocuses the individual’s attention in an effort to therapeutically calm them and make them feel safe.”

Heuer mentions a woman who was wandering in the care facility where Heuer works and feeling a strong urge to leave. The woman was getting agitated and escalating to the point that staff members were going to medicate her. Heuer stepped in and asked the woman if she wanted to take a walk. The woman agreed and soon calmed down as she and Heuer walked together and chatted.

With dementia, behaviors often manifest out of the person’s worry about their own safety or the safety of loved ones, Heuer notes.

“We all have that need to have a sense of purpose. Just because someone has dementia, they’re not less human. They have similar needs but have a different way of communicating them. Usually, there is a need behind every single behavior they’re displaying,” Heuer says.

>> Working through grief: Individuals with dementia and their loved ones often experience a range of grief-related emotions, from denial and avoidance to sadness. Counselors may find it helpful to use grief and loss techniques with these clients, Rumrill says.

Watching a loved one with dementia decline and seemingly change into a different person can feel similar to experiencing that person’s death or loss, Rumrill says. In the case of his grandmother, even her vocabulary and the way she spoke changed. She began using profanity and other words that Rumrill wasn’t previously aware she even knew. When she became angry, Rumrill says she would “go off” on people, which she never did prior to her dementia diagnosis.

“There’s a tremendous sense of loss that can go with that. The person you knew and loved isn’t there [any longer],” he says. “I was grieving the loss of who [his grandmother] was and also grieving with her over her loss of independence.”

Feelings of loss can also resurface for clients with dementia who are widows or widowers, even if they have previously processed their partner’s death. Dementia can reaggravate the person’s feelings of grief and sadness or even ignite feelings of anger toward a deceased partner for leaving them to go through their dementia journey alone, Rumrill says.

Family members and caregivers may experience repeated cycles of grief as their loved one’s dementia or Alzheimer’s progresses, Michalka adds. “Each time the loved one living with dementia progresses to the next stage, the client [a caregiver or family member] in some ways repeats the grieving process. They now are experiencing another loss. It is as if they have lost their loved one once again,” Michalka says. “It is extremely difficult for many clients to have mom or dad not know who they are or simply not remember their name. The client loses their loved one many times during the progression of dementia. At a minimum, the client loses the person their loved one once was, and then once again upon the passing of the loved one.”

>> Focusing on strengths: Clients with dementia are likely to be saddened by the anticipated or actual loss of their abilities. A counselor can help these clients flip their perspective to focus on what the person can still do, Heuer says. She often uses the words strengths and challenges, not weaknesses, during conversations about what the client is still able to do and enjoy.

For example, a client with dementia may no longer be able to maintain a garden outdoors, but gardening supplies and planter pots can be brought to the person inside so they can still get their hands in the soil. “Activities can change as the disease progresses,” Heuer notes.

>>  Using “tell me about” prompts: Gildehaus says that narrative therapy can be a helpful technique with clients who have dementia. These clients often respond well to storytelling prompts, even as their memories fade. It can be therapeutic for clients with dementia to share memories and, in turn, to feel heard and understood, he explains.

Similarly, Heuer uses reminiscence therapy with clients with memory loss, asking individuals to talk about their careers, families, and other favorite memories. It is not helpful, however, to frame questions by asking clients whether they remember something, she stresses. Instead, counselors can use gentler “tell me about” prompts to spur clients to open up. For example, instead of asking, “Do you remember your parents?” a counselor would say, “Tell me about your parents,” Heuer explains.

Rumrill notes that group work can be very helpful for caregivers or family members of people with dementia, especially to prevent or ease burnout. Motivational interviewing, cognitive behavioral techniques, and rational emotive techniques can also help clients process the changes and stresses that come with having a loved one with dementia. But Rumrill urges counselors to use whatever techniques they find to be most helpful to and best suited for the client.

Dementia is “no more stressful than any other life issue that brings people to counseling; it’s just different,” Rumrill says. “It has unique features that need to be understood to help. Marshal all the coping reserves you can to help the client.”

>>  Offering empathic listening: Gildehaus notes that professional counselors’ core skills of listening, empathic reflection and normalization can go a long way for clients dealing with dementia.

“In my experience, clients struggling with dementia need someone to listen to them for understanding without confronting them, trying to argue with them, or trying to fix them,” Gildehaus says. “Normalizing frustrations and fears related to memory challenges and aging also helps clients feel less defective.”

When working with clients who have dementia, Gildehaus says his primary objective is to offer a nonjudgmental environment in which these individuals can share their frustrations and fears. “My efforts are focused on providing an interaction where they feel heard and understood without feeling questioned or having someone trying to talk them out of their ideas,” he says.

This came into play this past summer as Gildehaus faced a tough conversation with a client who needed to give up her right to drive because of cognitive decline. “This was very hard for her,” he recalls. “She argued that she did not drive far, that she had not had any accidents, and that she didn’t care if she died in an accident. She became very emotional — tearful and angry. I listened empathically, validated her truths, and reflected her logic and feelings. Then, I asked if she wanted her lasting legacy to be causing someone else’s injury or death. She agreed this was not what she wanted. We then explored options and resources that would allow her to maintain her freedom and active schedule without driving. We talked about local taxi services, friends who were going to the same activities [and could give her a ride], and the obvious solution became allowing her home health care provider to drive her most of the time.”

Still human

Individuals with a dementia diagnosis often feel as if they’ve been labeled as damaged goods, “deemed incompetent and unable to do anything for themselves,” Heuer says. The empathy and support that professional counselors are capable of offering these clients can go a long way toward changing that mindset, she asserts.

People with dementia “are still capable, still human, and they have emotions,” Heuer emphasizes. “There is an immediate stigma attached to someone [with a dementia diagnosis] that they aren’t able to do anything for themselves, and that’s often a source of frustration. There is an assumption that they’re helpless. But they will say, ‘I need help.” … They will let you know. What they need from counselors — and everyone else — is the recognition that they are still a person and still human.”

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Counselors as caregivers

Despite a career as a helping professional, Phillip Rumrill found himself feeling “inadequate” when it came to caring for his grandmother as her dementia progressed. He admits that he learned how to manage “through trial and error.”

The professional objectivity that allows practitioners to help others process issues in counseling simply isn’t there when it comes to caring for their own loved ones, says Rumrill, a certified rehabilitation counselor and a professor and coordinator of the rehabilitation counseling program at Kent State University.

“All of this stuff that you know about professionally goes out the window when you experience it personally,” Rumrill says. “You may have helped a client who is dealing with this, but it’s not the same when you’re going through it yourself. … You may think that because you have expertise in helping others you might know procedurally what to do, but it’s just different when it’s affecting you on a core level. You can arm yourself with information, but it’s going to be very different to be going through it on your own.”

Although it may not come easily, counselors who have loved ones with dementia should heed the same guidance they would give to clients in the same situation, including keeping up with their self-care and asking for help when needed.

After his grandmother passed away in 2009, Rumrill collaborated with two colleagues, Kimberly Wickert and Danielle Dresden, who also had cared for loved ones with dementia, to write the book The Sandwich Generation’s Guide to Elder Care. Their hope was that their insights might help other practitioners who were facing similar challenges. “You can’t be [your] family’s counselor,” Rumrill says. “Sometimes you have to shut off your professional side and deal with the humanity of your own experience.”

John Michalka, a licensed professional counselor and private practitioner, says he and his wife experienced a range of issues — from stress to anxiety to grief — while caring for his mother-in-law. Michalka’s mother-in-law, who had vascular dementia, moved in with Michalka and his wife in 2013 when she was no longer able to care for herself.

“I took a hiatus from work, and for the last two years of her life, I cared for her until she passed [in January 2015],” he says. “I watched my wife, as a daughter, struggle with pain and grieving during every step down of the disease, from [her mother] forgetting our names to [us] becoming absolute strangers. For me, I was the caregiver and did my best to suppress the emotion. To say the least, caring for anyone living with dementia can be extremely difficult. At least it was for me.”

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The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 helpline at 800-272-3900 or visit alz.org (click the “Help & Support” tab for links to online and local support groups).

Also, the U.S. Administration on Aging offers an eldercare services search tool at eldercare.acl.gov. Resources are also available from the Dementia Action Alliance (daanow.org) and the Family Caregiver Alliance (caregiver.org).

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Contact the counselors interviewed for this article:

• Matt Gildehaus: matt@lifedeltacounseling.com
• Jenny Heuer: jenheu77@gmail.com
• John Michalka: john.michalka@cvcstl.com
• Phillip Rumrill: prumrill@kent.edu

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Read more

Check out an extended Q+A with licensed professional counselor Ruth Drew, the Alzheimer’s
Association’s director of information and support services, at CT Online: ct.counseling.org/2019/12/qa-helping-clients-affected-by-dementia/

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I found out about this exciting group from a fragrance advertisement for Hope, Hope Sport, and Hope Night, all available at Bergdorf Goodman.com. All net profits support Hope For Depression Research Foundation.

Learn more at HOPEFORDEPRESSION.ORG

Please check out their site, it’s packed full of information and resources.

Melinda

Our Mission

The mission of the Hope for Depression Research Foundation (HDRF) is to fund cutting-edge, scientific research into the origins, diagnosis, treatment and prevention of depression and its related mood and other emotional disorders – bipolar disorder, postpartum depression, post-traumatic stress syndrome, anxiety disorder and suicide.

In 2010, HDRF launched its Depression Task Force (DTF) – an outstanding collaboration of seven leading scientists, at the frontiers of brain science, from different research institutions across the U.S. and Canada.  These scientists have developed an unprecedented research plan that integrates the most advanced knowledge in genetics, epigenetics, molecular biology, electrophysiology, and brain imaging. To accelerate breakthrough research, they share ongoing results, in real time, at a centralized data bank, the HDRF Data Center.

HDRF was founded in April 2006 by Audrey Gruss in memory of her mother, Hope, who suffered from clinical depression.

Every dollar raised goes directly to research.

Founder’s Message

My mother Hope suffered from depression for most of her late adult life. My sisters, father and I witnessed decades of misdiagnosis, trials of medication, troublesome side effects and the psychic pain and life-sapping loss of energy that is a mark of clinical depression.

When she passed away in December 2005, I vowed that I would do all in my power to help conquer this dreaded illness. As my mother’s patient advocate, I had consulted with leading psychopharmacologists to better understand her various treatments and medications. I soon discovered the staggering reality that in the twenty-five years since the introduction of Prozac and the other SSRI antidepressants, there has been virtually no change in the basic treatment of depression, just adjustments in the use of existing approaches.

In order to encourage more cutting-edge research at a faster pace, in 2006 I started a new foundation in memory of my mother Hope – the Hope for Depression Research Foundation (HDRF).

Our mission is two-fold: First and foremost HDRF funds advanced research to find the causes of depression, a medical diagnosis, new medications and treatments and prevention of depression. To that end, HDRF has formed the Depression Task Force — an outstanding collaboration of leading neuroscientists across the US and Canada, each a pioneer in their own field. Together they have created an unprecedented research plan – The Hope Project – that accelerates the research process by sharing ongoing results, in real time, at a new HDRF Data Center.

The second goal is to raise awareness of depression as a medical illness and to educate the public about the facts of depression. We educate and inform in order to help remove the stigma of depression.

The study of depression and the brain is the last frontier of medicine. Your support for HDRF’s pioneering research can make a difference to those you personally know and to the hundreds of millions suffering worldwide.

Although doctors couldn’t find a cure for my mother’s psychic pain in her lifetime, I feel confident that with the progressive direction of our research and the encouragement of “out-of-the-box” scientific thinking, in my lifetime we will make significant strides, providing hope and help to everyone who is touched by depression.

Sincerely,
Audrey Gruss

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Jan 07,2020

Jeff Grabmeier Ohio State News grabmeier.1@osu.edu

Study suggests friends don’t encourage them to seek help

When college students post about feelings of depression on Facebook, their friends are unlikely to encourage them to seek help, a small study suggests.

In fact, in this study, none of the 33 participating students said their friends told them they should reach out to a mental health professional to discuss their problems.

Instead, most friends simply sent supportive or motivating messages.Scottye CashBut that may not be good enough for people who are truly depressed – as some of the people in this study probably were, said Scottye Cash, lead author of the study and professor of social work at The Ohio State University.

“It makes me concerned that none of the Facebook friends of students in this study were proactive in helping their friend get help,” Cash said.

“We need to figure out why.”

The research, published online recently in the journal JMIR Research Protocols, is part of a larger online study of health outcomes of 287 students at four universities in the Midwest and West. This study included the 33 students in the larger study who reported that they had “reached out on Facebook for help when depressed.”

The students reported what type of post they made and how their friends responded. They also completed a measure of depression.

Results showed that nearly half of the participants reported symptoms consistent with moderate or severe depression and 33 percent indicated they had had suicidal thoughts several days in the previous few weeks.

“There’s no doubt that many of the students in our study needed mental health help,” Cash said.

The two most common themes in the participants’ Facebook posts were negative emotions (“I just said I felt so alone,” one student reported) or having a bad day (“Terrible day. Things couldn’t get any worse,” one wrote). Together, those themes appeared in about 45 percent of the posts the students reported on.

But only one of the students directly asked for help and only three mentioned “depression” or related words, Cash said.

Many participants found ways to hint at how they were feeling without being explicit: 15 percent used sad song lyrics, 5 percent used an emoji or emotion to indicate their depressed feelings and another 5 percent used a quote to express sadness.

“They didn’t use words like ‘depressed’ in their Facebook posts,” Cash said.

“It may be because of the stigma around mental illness. Or maybe they didn’t know that their symptoms indicated that they were depressed.”

Students reported that the most common responses from their friends to their posts about depression (about 35 percent of responses) were simply supportive gestures. “All my close friends were there to encourage me and letting me know that everything will be okay,” one student wrote.

The next most common response (19 percent of posts) was to ask what was wrong, which participants didn’t always take positively. “It is hard to tell who cares or who’s (just) curious this way, though,” one participant wrote.

The other three most common responses (all occurring 11 percent of the time) were contacting the depressed friend outside of Facebook, sending a private message within the app, or simply “liking” the post.

Although participants reported that none of their friends suggested they get help, Cash said she is sympathetic to the plight of these friends.

“For the friends reading these posts, they often have to read between the lines since few people came right out and said they were depressed,” Cash said.

“Many people used quotes and song lyrics to talk about how they’re feeling, so their friends really had to decode what they were saying.”

Cash said the findings point to the need for more mental health literacy among college students and others so they know how to recognize the signs of depression and how to respond.

“Both Facebook and colleges and universities could do more to give these students information about resources, mental health support and how to recognize the signs of depression and anxiety,” she said.

“We need to increase mental health literacy and decrease mental health stigma.”

Co-authors of the study were Laura Marie Schwab-Reese of Purdue University; Erin Zipfel, a former graduate student at Ohio State; and Megan Wilt and Megan Moreno of the University of Wisconsin.

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Facebook posts about depression rarely spark friends to suggest counseling, a new study suggests. 

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Please join me in welcoming Ann Bale from Don’t Lose hope to Survivors Blog Here. We are excited to have her as a Contributor and look forward to a great 2020. 

Ann has a Master’s Degree in Psychology, a Diploma in Clinical and Pastoral Counselling, and has completed a year of psychotherapy training. She has worked as a counsellor in private practice, and has taught in schools and colleges (both online and in classroom settings.) In addition to this, she has written accredited certificate, diploma and degree courses in counselling and psychology, in the UK and in North America. Ann has been working in education, counselling and psychology for over 30 years.

Ann’s blog Don’t Lose Hope, http://sexaddictionpartners@wordpress.com supports, helps heal and educate partners of sexual addiction. We are committed to sharing knowledge and offering support to those whose lives have been affected by addiction, are dealing with a crisis, have experienced a trauma, are walking through a period of grief and loss, or who are working on relationship issues. You can reach Ann at ann@coachingskillsintl.com.

Please stop by, welcome Ann and be sure to check out her website.

Melinda 

Gluten-Freedom by Alessio Fasano, MD with Susie Flaherty

 

Ingredients:

1 1/2 to 2 pounds salmon (wild-caught preferred with skin on)

Juice from 2-3 limes

Olive Oil

Sesame Seeds

Preheat oven to 350 degrees. Line baking sheet with parchment paper and coat very lightly with olive oil. Place salmon, skin side down, on parchment paper in the pan.

Squees the juice of 2-3 limes into a bowl. Use a pastry brush to coat salmon with lime juice. Coat the top of the salmon with sesame seeds. Bake for 15-20 minutes. Fish is done when it flakes easily with a fork. Be careful to not overcook.

 

Dear U.S. Pain Foundation advocates,  We wanted to let you know about an opportunity to take action on a federal bill that would expand and coordinate scientific research of cannabidiol (CBD) or marijuana-derived products, allowing researchers to better understand their potential efficacy and safety. While medical cannabis is increasingly available in a number of states nationwide, too often, there is little clinical data available to help patients and health care providers make informed decisions about whether it would work well for their specific condition, or how much and what type to use.    Introduced by Senators Dianne Feinstein, Chuck Grassley, and Brian Schatz, The Cannabidiol and Marihuana Research Expansion Act (S. 2032) would streamline the research process, eliminating the lengthy delays and roadblocks researchers face when trying to study medical marijuana and CBD-derived products.  Why U.S. Pain supports S. 2032 We believe people with chronic illness and pain should have access to all safe, effective treatments, including medical cannabis. Research is critical as it would lead to increased understanding about cannabis as a therapeutic option (including efficacy, safety, proper dosing, best delivery methods, etc.) and may lead to new, FDA-approved treatment options for people with pain.  Now is the time to take action  U.S. Pain has created two online campaigns for advocates on this issue because we’d like to accomplish two goals:  1. Have the Senate Committee on the Judiciary schedule a hearing on the bill2. Gain additional cosponsors of the bill Click here and see if your Senator sits on the Committee on the Judiciary. If they do, use the button below. Urge your Senator to hold a hearing >> If your Senator doesn’t sit on the committee, you can still help support medical marijuana and CBD research by requesting he/she becomes a cosponsor.Get your Senator to cosponsor the bill  >>To learn more about U.S. Pain’s views on medical cannabis, read our position statement here.  Thank you for supporting us as we fight to open up research opportunities surrounding complementary and integrative therapy options for people with pain.  Sincerely,  Ellen Lenox Smith Co-Director for Medicinal CannabisU.S. Pain Foundation

U.S. Pain Foundation  ellen@uspainfoundation.org | uspainfoundation.org  670 Newfield Street  Suite B  Middletown, CT 06457

October 16, 2019

Psychiatry Advisor Contributing Writer

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Researchers are hailing ketamine as the most significant new development in psychiatry given its high efficacy for treating major depression. Recent evidence has shown that in addition to depression, ketamine may also be a promising treatment for obsessive-compulsive disorder, post-traumatic stress disorder, and a number of other treatment-refractory neuropsychiatric disorders. In a recent paper published in Drug Discovery Today, researchers explore ketamine’s role in revolutionizing new mental health treatments and discuss how this drug’s mechanism of action has led to an influx of new research and studies on depression treatment.

Ketamine was approved by the US Food and Drug Administration (FDA) in 1970 as an anesthetic and safe alternative to phencyclidine. The therapeutic benefits of ketamine as an antidepressant were explored years later because of a stigma on from its widespread recreational use during the late 1960s and 1970s, and this agent was initially only administered intravenously.

In 2000, researchers found that ketamine had strong, fast-acting, and long-term effects in depression. In a randomized, placebo-controlled, crossover design study, patients with depression received 0.5 mg/kg of ketamine or saline on the first day of testing. Treatments were switched 1 week later. Researchers found that the antidepressant effects of ketamine began within 4 hours, peaked at 72 hours, and lasted for 1 to 2 weeks thereafter.¹ In a 2006 study, this finding was replicated in an independent group of 18 patients with major depressive disorder who were resistant to other treatments. Compared with participants who received placebo, those who received ketamine showed significant improvement in symptoms within 110 minutes, with 35% maintaining significant response for at least 1 week.²

In subsequent years, results from a number of placebo-controlled studies revealed that ketamine is largely effective and long-acting in treatment of bipolar disorder and treatment-resistant major depressive disorder and produces antisuicidal and anti-anhedonic effects in mood disorders.

Many of today’s depression treatments are monoaminergic-based, including monoamine oxidase inhibitors, tricyclic antidepressants, selective serotonin reuptake inhibitors, and serotonin-norepinephrine reuptake inhibitors. These treatments have been proven effective for a large number of patients. However, a significant subset of patients with major depressive disorder do not respond to these agents.¹ When compared with ketamine, these agents have a delayed onset of action that can take up to several weeks — increasing the risk for organ failure and suicide in this subset.

A single dose of ketamine is shown to produce rapid and robust effects within hours to days of administration. This agent is also shown to rapidly reduce suicidal ideation, fatigue, and anhedonia, and improve circadian rhythm and sleep patterns in major depressive disorder.¹ Researchers point out that these symptoms are synonymous across several psychiatric disorders but remain inadequately treated by monoaminergic-based agents.

The notable differences between ketamine and standard antidepressants have spurred researchers to develop new ketamine treatments that are less invasive than those involving intravenous administration. In March 2019, the FDA approved an intranasal version of ketamine called esketamine for adults with treatment-resistant depression.

Researchers say that ketamine’s mechanism of action in the context of clinical antidepressant efficacy is only partially clear. At present, researchers understand that ketamine’s mechanism of action goes beyond modulating the neurotransmission of glutamate and includes direct and indirect high affinity antagonistic binding properties at the N-methyl-D-aspartate receptor, as well as a-amino-3-hydroxy-5-methyl-4-isoxazole-propionic acid throughput modulation.¹ Researchers have also noted that ketamine is a weak agonist at the mu, delta, and kappa opioid receptors.¹

Other mechanisms that may contribute to ketamine’s efficacy for depression treatment include agonism at the dopamine receptor, antagonism at the M1–3 muscarinic receptors, and inhibition of the reuptake of serotonin, dopamine, and norepinephrine.¹

Researchers are continuing to investigate ketamine’s underlying mechanism of action so they can progress with identifying and developing new agents that work similarly and that offer fewer side effects, as well as prolonged therapeutic effects.

Ketamine has influenced researchers to place more focus on the glutamatergic system when developing new therapies, since it is thought that rapid-acting antidepressants may trigger neurobiological events deeply rooted in the rapid reconfiguration of limbic circuitries.¹ In addition to intranasal esketamine, other examples of rapid-acting glutamatergic agents that show promising results are nitrous oxide and sarcosine.

Nitrous oxide has been used as an anesthetic for more than 150 years and offers many of the same mechanisms as ketamine. Results from a 2015 study revealed that patients with treatment-resistant depression who received nitrous oxide experienced significant improvement in symptoms at 2 hours and 24 hours compared with placebo. Symptoms that showed the largest changes in improvement were depressed mood, guilt, suicidal ideation, and psychic anxiety.³ Additional trials are being conducted to determine the safety, efficacy, and optimal dosing of nitrous oxide for depression.

Sarcosine is an amino acid that functions as a glycine transporter-1 inhibitor and has co-agonistic properties at the N-methyl-D-aspartate receptor. Results from clinical trials have shown that sarcosine is a promising treatment for major depressive disorder and produces no adverse events. However, compared with ketamine, sarcosine does not produce the same rapid-acting effects within the same amount of time.¹ Studies are currently underway to replicate the effects of both nitrous oxide and sarcosine in depression.

Ketamine has been found to enhance the transmission of gamma-aminobutyric acid (GABA) to reduce depression. Shortly after approving intranasal esketamine, the FDA approved an agent called brexanolone that acts as a positive allosteric modulator of GABA receptors. Brexanolone is currently being used to treat postpartum depression since this therapy produces rapid- and long-acting antidepressant effects similar to that produced by ketamine. The exact mechanism of action of brexanolone remains unclear, though researchers theorize that it binds to synaptic and extrasynaptic GABA receptors to increase functionality. Brexanolone is still being tested in clinical trials, since this agent has been associated with serious adverse events including syncope, altered state of consciousness, suicidal ideation, and intentional overdose.¹

Related Articles

• A Daytime Nap May Contribute to Altered Emotional Processing in Depression
• Suicidality, Depression, and Anxiety Linked to Tension Headaches
• Depression, Bipolar Disorder Linked to Impaired Adult Visuospatial Memory

Buprenorphine, an opioidergic agent currently used to treat opioid use disorder, is also being studied for treatment of depression. Opioidergic agents were once used to treat melancholia during the 1950s before less addictive therapies became available and are shown to have a wide variety of actions in the brain that reduce depression. Studies evaluating the effects of buprenorphine by itself and combined with other agents on depression have produced promising results, though the FDA has stated it needs additional clinical data before this agent can be used to treat major depressive disorder.

Given what studies have since revealed about the efficacy of ketamine in depression, many researchers are reconsidering the potential benefits of banned or scheduled drugs for psychiatric patients.

Psychoactive drugs being reevaluated include lysergic acid diethylamide (LSD), 3,4-methylenedioxy-methamphetamine, and psilocybin. Researchers are determining whether microdosing these substances could produce therapeutic benefits without harmful side effects or abuse. Results from a 2011 study revealed that psilocybin was successful at significantly reducing symptoms of depression for up to 6 months in patients treated for advanced-stage cancer.¹ In a 2015 study that examined the effects of LSD in patients with life-threatening diseases who were experiencing anxiety, LSD was safe, well-tolerated, and effective at reducing psychiatric symptoms.¹

Researchers say that the recent FDA approval of intranasal ketamine represents a major breakthrough in psychiatry and that advances in ketamine or ketamine-like treatments may greatly improve the quality of life for patients with depression who do not respond to current treatments. Studies conducted on ketamine have paved the way for research evaluating novel approaches for the prevention and treatment of depression.

Disclosure: One author is listed as a co-inventor on a patent for the use of ketamine in major depression and suicidal ideation, among others. Please see original reference for a full list of authors’ disclosures.

References

1. Kraus C, Wasserman D, Henter ID, Acevedo-Diaz E, Kadriu B, Zarate CA Jr. The influence of ketamine on drug discovery in depression [published online August 2, 2019]. Drug Discov Today. doi: 10.1016/j.drudis.2019.07.007

2. Zarate CA Jr, Singh JB, Carlson PJ, et al. A randomized trial of an N-methyl-D-aspartate antagonist in treatment-resistant major depression. Arch Gen Psychiatry. 2006;63(8):856-64.

3. Nagele P, Duma A, Kopec M, et al. Nitrous oxide for treatment-resistant major depression: a proof-of-concept trial. Biol Psychiatry. 2015;78(1):10-18.

Recommended For You

• Childhood Adversity May Lead to Inflammation in Adult Depression – Psychiatry Advisor
• Body Mass Index, Weight Predictive of Elevated Depressive Symptoms – Psychiatry Advisor
• Does Adding Fluoxetine to Cognitive Behavioral Therapy Reduce Depression in Youth? – Psychiatry Advisor

BC2M 4th Annual SF Student Summit

300 BC2M High School club members gathered in San Francisco on November 2nd to mark our 4th Annual Student Summit. Thanks to our amazing host, Pinterest, these teens spent an afternoon engaging in mental health conversations, participating in exciting activities, and meeting other students from around the Bay Area. We are so grateful for our keynote speaker, Jen Gotch, CCO and founder of ban.do, in sharing her personal story and path to successfully managing her mental illness. She spent hours engaging in Q&A following her time on stage! After a morning filled with various speakers and an exciting activity fair, our students dispersed into breakout sessions where they chose workshop tracks covering the following topics: Advocacy in High School and Beyond; Mental Health & Interpersonal Relationships; Mental Health in the 21st Century; and Identity and Mental Health. The track system was a hit and our students gave us amazing feedback on this new change we implemented. The BC2M Summit is one of the biggest highlights of the year for the students and allows them to learn from one another, build a movement of change in their community, deepen their understanding of mental health topics, and make life-long friends. With the inspiration and hope that filled the room, we know that these students will put an end to stigma and create a more empathetic and compassionate world.   Special thanks to our sponsors for making the event possible: Pinterest, David & Lucile Packard Foundation, Palo Alto Medical Foundation and Kaiser Permanente.

An Extraordinary Evening Fighting the Stigma

Sydel Curry and Damion Lee, Ben Stiller and Zak Williams, Dave Grohl and Violet Grohl

For the last seven years, Bring Change to Mind has set aside one night each Fall to celebrate Revels & Revelations. This magical night is meant to bring our stories forward; highlight our student advocates; laugh, cry and sing along to wonderful entertainers; and most importantly, fund our efforts to end stigma. October 17th in San Francisco was quite a night and we wish you all could have been with us. 24 BC2M High School club members represented their peers at Revels and shared the work they are doing on their campuses and why mental health advocacy is so important to them.  Their stories are courageous and inspirational. Each guest was asked to share why they support BC2M – the students later brought these notes and special intentions to the stage in a very emotional processional.   We were honored to bestow the third Robin Williams Legacy of Laughter Award to Ben Stiller. His heartfelt acceptance speech made for an emotional evening. Performances at Revels included the incredible line up of: Darren Criss, Dave Koz, JB Smoove, Malin Akerman, Margaret Cho, Charles Jones, and the beautiful voice of Violet Grohl, accompanied by her father, Dave Grohl, and Rami Jaffee of the Foo Fighters. Our hearts continue to soar as we think of the generosity of each person in the room that night.    We thank those that attended, have made contributions to support our work or choose to share our work on social media. A special thanks to our Revels partners: American Airlines, VX Capital, St. Regis San Francisco, WindRacer wines, and Ideas Events. Together we will save lives and put an end to stigma.

Take a moment to watch a few highlights from the night!

Support Bring Change to Mind Today

Help support the life-changing work our high school students are accomplishing in their communities and our expansion to bring this program to more schools throughout the country.

D O N A T E

October 16, 2019/ U.S. Pain Foundation/ 0 Comments

October 11, 2019

Centers for Medicare & Medicaid Services (CMS)

Comments on the Request for Information (RFI) on the Development of a CMS Action Plan to Prevent Opioid Addiction and Enhance Access to Medication-Assisted Treatment

The U.S. Pain Foundation is pleased to respond to CMS’s request for information to inform the development of a CMS Action plan to prevent opioid addiction and improve the treatment of acute and chronic pain. The U.S. Pain Foundation is the largest 501 (c) (3) organization for people who live with chronic pain from a myriad of diseases, conditions and serious injuries. Our mission is to connect, support, educate and advocate for those living with chronic pain, as well as their caregivers and healthcare providers.

Chronic pain is an enormous public health problem. The CDC and NIH have reported that 50 million Americans live with chronic pain and 19.6 million live with high-impact chronic pain that interferes with their ability to

1

There are currently very few highly effective treatments for many pain conditions. Managing pain is a matter of finding the right combination of treatments that allows pain sufferers to function and have some quality of life. We believe people with chronic pain should have access to a wide range of therapies and treatments because pain is very individual – what helps one person living with pain will not necessarily help another.
Most people living with chronic pain spend years of trial and error searching for treatments that will help to reduce their pain, while struggling to manage their lives. This is extremely wasteful from a personal standpoint as well as an economic one.

We believe that when it comes to chronic pain, CMS’s goal should be to get beneficiaries effective treatment sooner. Our recommendations for accomplishing this are as follows:

1. Compensate physicians for time spent coordinating complex care

Chronic pain patients require more time from their health care providers, because by its very nature, chronic pain is complex and challenging to treat. Doctors should be able to spend more time conducting a thorough pain assessment and developing a treatment plan at the first visit rather than

1 CDC. Prevalence of Chronic Pain and High Impact Chronic Pain Among Adult – U.S., 2016. MMWR Rep 2018;67:1001-6.

contact@uspainfoundation.org Main: (800) 910.2462 670 Newfield Street, Suite B 1 http://www.uspainfoundation.org Fax: (800) 929 -4062 Middletown, CT 06457

function on a daily basis.
with chronic pain and 5.4 million live with high-impact chronic pain. The Medicare population also includes disabled Americans younger than 65. Since pain is the number one cause of disability in the U.S., we can therefore assume that the number of Medicare beneficiaries living with pain is much higher than those reported numbers. Because many Americans living with high-impact chronic pain are unable to work or can only work part-time, many also depend on Medicaid.

That same study reported that of Americans over the age of 65, 13.5 million live

the fifth visit to the fifth doctor which is the current norm. Furthermore, because the cause, manifestations, and severity of chronic pain can vary so widely from person to person, there is no simple or uniform solution to managing it. Each patient is entirely unique and requires a unique treatment plan.

Individualized, multimodal, integrative care is widely understood to be the best and most effective approach to managing pain. But it requires time and resources to identify and try various modalities and coordinate this care. A traditional 10-minute appointment does not provide sufficient time for a provider to create and implement a multimodal treatment plan, and to continually reassess that plan as the individual’s health and pain change over time.

The lack of reimbursement for coordinating care and managing complex care is perhaps one of the most significant impediments to proper pain care. It has resulted in an overuse of quick fixes—like a reliance on medication alone.

2. Reimburse for multimodal, multidisciplinary treatmentRehabilitation models of care, which emphasize integrated, multi-modal treatment, have been proven to be the most effective in reducing pain and improving function. Too often, pain management attempts to put a mere band-aid on pain levels, rather than address pain’s effects on function and quality of life. Chronic pain is a biopsychosocial disease, meaning it affects every aspect of an individual’s life, even more so when the individual lives with high-impact chronic pain. Thus, patients need and deserve care that addresses pain at multiple levels. For example, while medication and injections may help control pain, they do not give individuals tools for learning to live within their limitations. Restorative and complementary therapies, like physical therapy, occupational therapy, massage, yoga, and so on, are more suited to improving function and productivity and learning to live day-to-day with painful symptoms. Meanwhile, it is well-known that anxiety, depression, and other mental health conditions are common comorbidities of long-term pain. In fact, recent numbers from the CDC demonstrated that at least 10 percent of suicides in America involve someone living with pain. This vulnerable population needs earlier multimodal intervention that recognizes the full impact of pain on a person’s life. Patients with pain—especially those with high-impact pain—should have access to psychosocial care, including psychological counseling and peer support groups that is tailored to their unique challenges.Unfortunately, we have moved away from a bundled payment approach to this type of care, to the detriment of people with pain. It’s vital we return to reimbursing for multimodal, multidisciplinary treatment..
3. Incentivize innovative value-based models of care that integrate multimodal treatmentThe cardiac care model, which incorporates exercise, nutrition and other modalities, is one innovative

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approach that has been very successful and cost-effective at reducing the burden of heart disease. This is a model that takes into account that heart disease must be attacked from multiple angles, and that treatments and therapies work best in combination with one another.

This model also has proven that multidisciplinary, multimodal care can be cost-effective care. By investing health care dollars up front in managing heart disease and preventing cardiac events, we have saved millions of dollars in terms of reducing hospitalizations and emergency room visits. Beyond saving on direct healthcare costs, no price tag can account for the enormous reduction in suffering and lives lost.

Chronic pain is just as complex as heart disease. It similarly gets worse—and more expensive to treat– without comprehensive, multimodal early intervention. CMS should encourage and reimburse innovative integrated models of care for chronic pain.

4. Remove access barriers to evidence-based non-opioid drugs and medical devicesCMS should require that at least two medications in each class of non-opioid medications commonly used for pain—such as antidepressants (SSRIs, SNRIs, or tricyclics), anticonvulsants, corticosteroids, NSAIDs, muscle relaxers, triptans, calcium channel blockers, topicals and so on)—are in the lowest-cost tier in every Part D plan formulary.It is vital to recognize that, again, each individual is unique, and what works for one person may not work for another. Patients must have access to various options to determine what reduces their pain levels. Unfortunately, many patients cannot afford the high copays on these medications, creating enormous and unnecessary barriers to safer, non-opioid medications. If CMS is committed to reducing opioid use, it must make alternative medications more affordable.In addition, an increasing number of evidence-based medical devices for pain management are available, with more coming to market each year. These devices represent an important category of treatment, especially in that they often provide sustained relief and generally come with less side effects than many other interventions. CMS must work to improve access to these types of devices by reducing out-of-pocket costs and removing overburdensome prior authorization requirements. In particular, CMS should remove the requirement for a psychological evaluation prior to obtaining spinal cord stimulation devices. There is no such requirement for surgery, which is much riskier, or for other treatments for pain.
5. Partner with NIH/NCCIH to continue to build the evidence base for complimentary treatments like acupuncture for chronic low back pain (ie. therapeutic massage, yoga, tai chi, aquatherapy)
   This is an area where data collection is essential to determining the value of these modalities for pain control. There is much anecdotal evidence that many complimentary techniques, especially gentle

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exercise and mobility programs, are helpful in the ongoing management of chronic pain. These interventions can also be cost-effective, especially those that train patients on a program they can then practice at home. Exercise and mobility programs also do a lot to restore function, in addition to general pain reduction. But there is a lack of funding to do the randomized control trials that are necessary to prove their value. If we are truly committed to reducing opioid use, we must investigate and make available evidence-based alternatives for pain relief.

6. Reimburse for promising treatments in specific conditions as evidence becomes available.The approach that CMS is using for chronic low back pain and acupuncture is an excellent model. In this instance, CMS is focusing on a narrow pain condition with one modality and a large subject population. This approach correctly recognizes that different modalities work differently for different types of pain—and must be studied accordingly. In particular, we commend CMS for covering treatment costs as part of this study. This reflects an understanding that cost is an enormous barrier to care, especially for the Medicare and Medicaid populations, who typically have limited ability to work. We would recommend using this approach simultaneously for other specific conditions.
7. Encourage states to make more complementary and integrative care available through MedicaidA number of states have granted Medicaid waivers to cover complementary treatment for specific pain conditions and then studied the effect of these modalities on patients’ pain levels and function. One such example we are aware of is a waiver in Colorado to cover complementary treatments for spinal cord injury. We urge CMS to support more states in offering this type of Medicaid coverage.
8. Incentivize participation in pain management group programs, similar to Medicare Silver Sneaker Program for fitness club membership & Medicare’s Diabetes Prevention Program
   These programs have proven track records of helping patients more effectively cope with and manage chronic illness. Educating patients about ways to engage in self-management of their condition, and then incentivizing such self-care, could have a similarly positive impact on the pain population. If patients were reimbursed for the cost of membership in these programs, it would help them maintain wellness and function.
9. Reimburse for participation in chronic pain-specific patient education self-management and support group programs
   Similar to above, patient education on self-management and coping skills are key to living successfully with a chronic condition. These programs can be taught via support group models and provide essential information on topics such as: cognitive behavioral therapy; stress reduction techniques, like meditation; strategies for activity restriction and modification; and much more.Isolation, stigma, and a sense of helplessness are enormous problems faced by the pain population,and create significant barriers to care. As mentioned before, people with chronic pain have

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significantly higher incidences of mental health comorbidities, and are at greater risk of suicide.
It is well-known that mood disorders and stress can increase pain levels, and vice versa, creating a vicious cycle. CMS has a vested interest in providing more comprehensive care, that treats the whole patient—mind and body. Creating opportunities for connection, community, and education is vitally important.

10. Begin a serious effort to code for, collect, and analyze data on chronic pain in the Medicare and Medicaid population

CMS does not collect nor analyze epidemiologic data on chronic pain in its beneficiaries. We do not know the incidence of chronic pain in general, the prevalence of various pain conditions, trends over time, subpopulations at risk, nor the health consequences of pain in terms of morbidity, mortality and disability. It is critical to have this data to understand the scope of the problem. It is also vital in order to assess whether the improvements in care and interventions CMS undertakes in the Action Plan are effective in reducing the enormous burden of chronic pain.

In Section 6032 of the SUPPORT Act, Congress has called on CMS to use its authority to improve access to care for the millions of Americans whose lives have been devastated by the dual public health crises of opioid use disorder and pain. We are hopeful that CMS will give serious consideration to the recommendations we and others, such as the HHS Pain Management Best Practices Task Force have proposed. Now is the time for CMS to take bold and innovative action to ameliorate the enormous burden of chronic pain in America.

Sincerely,

Cindy Steinberg
National Director of Policy & Advocacy U.S. Pain Foundation
781-652-0146 cindy@uspainfoundation.org

contact@uspainfoundation.org Main: (800) 910.2462 http://www.uspainfoundation.org Fax: (800) 929 -4062

670 Newfield Street, Suite B 5 Middletown, CT 06457