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Patient Agitation in Alzheimer’s Disease: Implications for Patients and Caregivers

Real World Health Care recently sat down with Anton Porsteinsson, MD, Department of Psychiatry, University of Rochester School of Medicine. Dr. Porsteinsson is the Director of the University of Rochester Alzheimer’s Disease Care, Research and Education Program and has devoted his career to the care and study of individuals with memory disorders. Following up on his recent randomized clinical trial of citalopram, we discussed why it’s important to focus on treatments for AD-related agitation — both for AD patients and their caregivers.

Real World Health Care: Why is it important to study agitation in patients with Alzheimer’s disease?

Anton Porsteinsson, MD, University of Rochester School of Medicine

Anton Porsteinsson, MD, University of Rochester School of Medicine

Anton Porsteinsson: Agitation is quite common in people with AD. It has a huge impact on their quality of life, as well as their family members’ and caregivers’ quality of life.

RWHC: Prior to your CitAD Randomized Clinical Trial, why had previous pharmacological treatment options been deemed unsatisfactory?

AP: A number of medications have been studied over time for this condition, including atypical and conventional anti-psychotics and mood stabilizers. But the efficacy they showed, if any, was modest at best. At the same time, these medications have serious potential complications such as increases in cerebrovascular events, sedation, falls, Parkinsonism and even increased mortality.

RWHC: Your trial focused on patients receiving psychosocial intervention. Why is psychosocial intervention important for AD patients?

AP: Medications should rarely be the first line of treatment for AD patients. Not everyone needs to be treated with medications. That’s why it’s important to evaluate the root cause of the agitation problem. Is the patient agitated because of something going on in his or her environment? I remember a situation from a few years ago when I was seeing a summertime spike in agitation-related consultations from patients in a particular nursing home. It turns out the nursing home didn’t have air conditioning. So it’s not surprising patients were bothered and agitated. In AD cases, agitation may have as much to do with your roommate as your receptors.

Psychosocial intervention helps to channel nervous energy and restlessness by involving patients in something purposeful, or even giving them some sort of outlet, like an area to pace around where they are safe and not in anyone’s way.

RWHC: The trial also focused on the effects of citalopram on caregiver distress. Why is this an important area of study?

AP: Caregivers, who are often family members with little or no medical training, may not understand what is going on with their loved one. They may take the patient’s behavior personally, which can cause a great deal of stress. Even if you’re a saint, it can build up and take a lot out of you.

Providing care for someone with AD is very hard under the best of circumstances. It’s even more difficult when the patient is verbally or physically aggressive, uncooperative, or agitated. Caregivers need advice, support and tools to help them handle the situation. They need to learn to give themselves breaks, that it’s OK not to be perfect, and that help is available for them. I find that a lot of caregiver stress is alleviated when, as health care providers, we listen to them and take their concerns seriously.

Caregivers need to know that agitation in AD patients is common and that there are ways to deal with it. Providers must connect them with resources like the Alzheimer’s Association and community agencies. We need to help alleviate their concerns about finances. And we need to help them set up a working plan on how to deal with their situation — to bring order to the chaos.

RWHC: How will the results of the CitAD Randomized Clinical Trial inform your future AD research?

AP: This trial was extremely educational for the research community. It was one of the first studies to show that a medication was effective in multiple ways — both on a clinical scale in reducing agitation among patients and in reducing caregiver distress. We also found efficacy for other AD patient behaviors like anxiety, irritability and delusions or hallucinations.

On the flip side, we discovered some complications. Citalopram has been used widely for decades with vulnerable populations. But in the last five or six years, it’s been found to not be as safe as once thought. It has the traditional SSRI side-effects of mild gastrointestinal distress and mild sleep pattern disturbances. But it also has been found to have an impact on cardiac conduction, especially in higher doses. In fact, when we were about three-quarters of the way through the study, the FDA suggested that, for people older than 60, there should be a dose limit of 20mg per day.

We confirmed this finding in our study. We also saw a drug placebo difference on a cognitive measure, the MMSE (Mini Mental State Examination). It isn’t clear if this was due to baseline differences between the two groups and drift toward the mean, as the placebo group improved on the MMSE and the drug group saw a modest decline, or if it was a true modest cognitive toxicity. Until proven otherwise, we have opted to assume this is a potential side effect and we warn against it.

For our next study, we considered testing a lower dose of citalopram (20mg daily), but then we found that the active isomer of citalopram (S-citalopram) seemed to be better correlated to benefits seen in the study, while the inactive isomer (R-citalopram) more correlated with the adverse effects. S-citalopram is available as a generic drug, approved for depression and anxiety. We intend to study that drug further.

RWHC: What are some other areas of AD research you’re currently involved in within the URMC Memory Care Program? What do you see as your most promising area of research?

AP: We have a broad portfolio of research programs at URMC. We’re one of the more active academic-based clinical research programs in the country. Currently, we’re conducting two behavior-focused studies. One is ongoing and is based on positive findings on dextromethorphan hydrobromide and quinidine sulfate, with a new formulation that uses less quinidine. We’re also looking at methylphenidate for treatment of apathy in patients with AD.

We’re also investigating new imaging techniques and various biomarkers to improve our ability to identify those at risk. And, we’re working to find better ways of monitoring the progression of the disease and response to treatment through the ADNI study, which just received a fourth wave of funding.

Other areas we’re investigating include prevention studies with people who are cognitively normal, but who have elevated beta-amyloid or genetic biosignatures that indicate future pre-disposition. We’re looking at a passive and active vaccine against amyloid production. And we have a number of different studies on the prodromal stage of AD, working with beta secretase inhibitors that block the production of beta-amyloid.

It’s actually a very exciting time in Alzheimer’s disease research. We’re seeing improved funding from federal sources and a rejuvenation of interest from the pharmaceutical industry. I’m quite optimistic that in the next five to ten years, we will make substantive progress in terms of our ability to limit AD. I think it’s overly optimistic to expect a cure in that timeframe, but we can certainly make a dent, particularly from an early intervention standpoint. Treating this disease early is the critical factor.

The Caregiver Act and AARP’s CARE Act Aim to Reduce Readmissions

Hospitals nationwide have gone to great lengths in an effort to reduce readmissions and improve patient quality. However, despite these concerted efforts, hospitals continue to incur fines from Medicare for excessive rates of patient readmissions, which are projected to total more than $428 million. Even worse, readmissions cost patients a collective $17 billion.

Eric Heil, RightCare

Eric Heil, RightCare

However, these numbers and rates are starting to drop thanks to new tools and programs, such as the Delivery System Reform Incentive Payment (DSRIP) Program. We’re also seeing new legislation being introduced in several states aimed at reducing readmissions by ensuring hospitals and their patients communicate better after they are discharged.

The Caregiver Act and AARP’s model state bill, called the Caregiver Advise, Record, Enable (CARE) Act, are examples of legislation currently being discussed in several states. Together, they have the potential to prevent hundreds of thousands of unnecessary hospital readmissions. Oklahoma was the first in the nation to pass legislation back in November 2014 and New Jersey followed suit later the same month.

The new laws would require hospitals to work directly with a patient’s caregiver (usually a family member) to ensure that necessary preparations are in place for the patient to successfully recover at home after being discharged. This process includes providing discharged patients and their caregivers with a clear path to follow for addressing medication, nutrition and living needs in-home.

To achieve this level of customized, high quality care, technology is essential to streamline the care coordination process and support the unique needs of patients. RightCare, a growing medical technology company, has an end-to-end software solution designed to assess patient risk and needs at the time of admission, ensure the most appropriate post-acute care plan is offered, and seamlessly transition patient information to post-acute care providers. RightCare’s software is based on 10 years of academic and clinical research and has helped hospitals nationwide optimize workflow, reduce length of stay times, reduce readmissions and ensure hospitals meet Medicare-mandated standards for preventable readmissions.

We’ve seen time and time again how effective post-care planning with providers, community organizations and technology can significantly decrease readmissions, so it’s encouraging to see these efforts are now supporting caregivers.

Readers: Are you a family caregiver? What are some of the challenges you face, and what tools are you using to help? Let us know in the comments.

Elder Care: Living Independently Thanks to Coordinated, Compassionate Care

Vera Brown of Churchville, Pa., was like many elderly Americans. She had multiple health issues including decreased mobility, degenerative joint disease, progressive dementia and aphasia from a stroke. But unlike some in her situation, she was able to live comfortably in her own home until her death in October, thanks to LIFE St. Mary. LIFE is a Program of All-Inclusive Care for the Elderly (PACE®), a unique model of care that helps people live safely at home with assistance from a team of compassionate healthcare experts.

A LIFE St. Mary nurse works with a patient

A LIFE St. Mary nurse works with a patient

Elder care can be expensive and frustrating. Nursing homes and other long-term care facilities can quickly eat up a person’s life savings as well as destroy their feelings of independence. But keeping the elder at home means family members or other caregivers need to drive to multiple doctor appointments, stay informed about medical issues, keep track of medications, and more—not to mention the worry that goes along with leaving their loved one at home during the day.

LIFE St. Mary offers 24/7 support and a range of services for elders and their caregivers: medical and in-home care; medications; transportation; physical, speech and occupational therapy; social work services; nutritional counseling and home-delivered meals; hearing, foot and dental care; adult day care; and caregiver respite. The hub of the program is the LIFE Center, a central location where doctors, nurses and other healthcare professionals offer treatment and monitor changes in participants’ health. Here, participants also receive nutritious meals and join in on a variety of activities to keep active and make new friends.

St. Mary Medical Center started LIFE five years ago to address the needs of the growing population of older adults in the Bucks County, Pa. area,” explains Erin Williams, manager, Outreach & Enrollment, LIFE. “The program is part of St. Mary’s commitment to improving the quality of life for everyone in our community, including elderly residents who need assistance to remain independent in their own homes.”

For Vera Brown, that assistance arrived at her front door three days a week, in the form of a LIFE van, which picked her up and took her to the LIFE Center. There, she received meals, therapeutic recreation, routine physical therapy and a full range of medical services. Vera’s LIFE team—her doctor, nurse, social worker, physical therapist, and home care nurse—collaborate to ensure that the care provided met her needs, and regularly updated her daughter to discuss her mother’s care plans. All of Vera’s medications came directly to the LIFE Center and were sent home with her. This saved her daughter the time of making trips or phone calls to the pharmacy, or coordinating doctor’s visits.

In addition to reducing headaches and hassles for family caregivers, LIFE helps to manage healthcare utilization and costs.

“The program costs about 30 percent less than nursing home care in Pennsylvania,” says Williams. “Program participants pay one monthly fee that covers all services, no matter how many of those services they use or how often. There are no copays or deductibles—even for medical equipment, prescriptions and transportation—so participants know exactly what their healthcare costs will be every month, with no surprises.”

Ms. Williams notes that LIFE’s coordinated care model is also helping St. Mary Medical Center reduce costs relating to unnecessary hospital and nursing home stays, medication errors, redundant tests and unnecessary labs. She says by reducing unnecessary hospital stays, “we’re saving a lot of healthcare dollars.”

“Holistic, patient-centered care can be difficult when elderly people stay in their home,” concludes Williams. “But with LIFE St. Mary, all care—including specialist care—is centrally coordinated, making it much easier for patients to access the care they need. Plus, we see our participants on a regular basis, so we can tailor services to each patient’s medical, psychological and social needs.”

“LIFE St. Mary is a wonderful program and a Godsend to aging and disabled individuals and their families,” says Marie Brown-Etris, daughter of Vera Brown. “For my mom, it was like they were an extended family who treated her with nothing but kindness through smiles, touches, hugs and kind words. The compassion and understanding for the people they serve is palpable.”

Are you a caregiver for an elderly family member or friend? Have you been able to take advantage of a PACE program like LIFE St. Mary? Tell us about your situation in the Comments.

Thanks Project Underscores Why Caregivers Matter to Patient Care

Although many people don’t see themselves as caregivers, more than 65 million Americans provide care on a daily basis for their vulnerable loved ones. This statistic, highlighted by Jeff Foxworthy along with Peter Rosenberger in a video created by AARP, demonstrates the importance of caregivers as advocates work to raise awareness around National Family Caregivers Month.

To say “thanks to as many caregivers as [they] can,” AARP and the Advertising Council are partnering to empower patients and their families to show their appreciation for those who care for them by sharing a personal message, photo or video of gratitude through the Thanks Project. This online tool recognizes family members and friends who are dedicated to taking care of loved ones and makes caregiving resources more accessible so that individuals know they’re not alone and that help is available.

According to a Nov. 5 New York Times story, most people who are caregivers do not identify as such, often feeling overwhelmed by responsibilities that can range from managing bills to providing transportation and preparing meals. To offer emotional support, AARP created a Caregiving site that provides everything from Planning and Resources to information addressing End of Life Care, as well as Grief and Loss. This web portal also enables visitors to chat with experts and ask questions, in addition to learning more about the experiences of those who care for loved ones.

“Since launching the Caregiver Assistance campaign with the Ad Council in August 2012, we have seen more than 10 million visits to AARP’s Caregiving Resource Center,” said Elizabeth Bradley, Strategic Communications Director of the Caregiver campaign. “Through the site, users are connected to valuable local resources and practical information, can find support to handle family dynamics and life-balancing issues, and engage and connect with experts and other caregivers. We hope caregivers feel more appreciated for their hard work and inspired to do the best they can.”

The Caregiver Action Network (CAN), which sponsors National Family Caregivers Month, is also highlighting the difference caregivers make in the lives of those they serve every day. As the leading family caregiver organization working to improve the quality of life for the 65 million+ Americans who care for loves ones, CAN provides online tools to help caregivers handle the responsibilities that come with buying groceries, organizing mail, cleaning homes and so much more.

In a recent Presidential Proclamation spotlighting National Family Caregivers Month, the Obama Administration helped draw national attention to the value of caregivers, who “take up the selfless and unheralded work of delivering care to seniors or people with disabilities or illnesses…With caregivers already balancing their own needs with those of their loved ones, and in many cases caring for both young children and aging parents, our Nation’s caregivers need and deserve our support.”

Paul DeMiglio

Paul DeMiglio

Do you know a caregiver or provide care for a loved one? How do you think individuals, communities and industry stakeholders can collectively mobilize to demonstrate appreciation for caregivers and more effectively strengthen support networks? Share your story and let us know what resources and strategies you think would be most useful.