a (16 pages)
Transcription
a (16 pages)
Features on people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight from the P E N N M E M O R Y C E N T E R SPRING 2013 Setting the standard of care How a diagnostic follow-up visit provides education, resources and support by Chelsea Brandt A little over a year ago, Tony Iero learned that his partner, Paul Myers, had Alzheimer’s disease. The news did not come as a complete surprise, but it left him reeling. “There was no warmth involved when the doctor delivered the diagnosis,” Iero said. “Paul took the mini mental examination. He didn’t score well and the neurologist just said, ‘He has Alzheimer’s disease.’ When she said that, it hit me like a ton of bricks. I was by myself, I was alone.” No support, suggestions or resources were offered. After leaving the visit, Iero immediately called Myers’ sister, Elizabeth, who was surprised that the doctor didn’t provide any suggestions on support groups or other resources to help patients with Alzheimer’s or their caregivers. After realizing the lack of information provided by his neurologist, Iero researched other practices in Philadelphia. This search led to the Penn Memory Center website. In the fall of 2011, Paul Myers and Tony Iero had a new patient evaluation at the Penn Memory Center. They haven’t looked back since. “I was very emotional at that time, and the staff was very, very helpful when I called. I felt the warmth—the caring—right away. Not only were we scheduled to be evaluated by Dr. Wolk, but we were also assigned to a health educator, Mirna Negròn, and I also had Felicia Greenfield by my side,” Iero said. At the Penn Memory Center, Paul Myers and Tony Iero experienced the diagnostic follow-up visit, a novel intervention provided to all patients and continued on page 2 The Penn Memory Center health education team provides specialized, one-on-one counseling and support to PMC patients and their families, including information about the diagnosis and a discussion of classes, programs and research opportunities. Above, clockwise, left to right: Mirna Negròn, Penn Memory Center health educator, Ricardo Santos and Sarah Windt, master’s level social work interns from the University of Pennsylvania School of Social Policy and Practice and Felicia Greenfield, LCSW, Associate Director for Clinical and Research Operations. PENN MEMORY CENTER PERELMAN CENTER FOR ADVANCED MEDICINE 215-662-7810 www.pennadc.org A NATIONAL INSTITUTE ON AGING-DESIGNATED ALZHEIMER’S DISEASE C E N T E R continued from page 1 families after an initial evaluation. At this specialized visit, the patient and their family meet not only with their doctor, who delivers the diagnosis and discusses prescription medications, but they also meet with a trained health educator who offers support, education, guidance and referrals. How the visit works Felicia Greenfield, Associate Director for Clinical and Research Operations and licensed clinical social worker, has played a major role in implementing and shaping the diagnostic follow-up visit. “It’s a unique and relatively new approach to patient care at the Penn Memory Center that we put into practice in 2010. We recognized that education is part of how patients and families live with a chronic disease. It’s just as important—if not more important—as a prescription,” said Greenfield. Greenfield notes that the visit is one part of a comprehensive approach to care that allows clinicians, health educators and staff to better connect with and support patients. “It does set our center apart from usual practice, but we think this is the future of care.” At the diagnostic follow-up visit, the patient and their family members meet with their clinician to review the results of the first visit, including their cognitive testing and MRI or other diagnostic imaging scans. After the diagnosis and treatment options are discussed the focus of the visit shifts, and a health educator meets with the INSIGHT patient and family. In addition to supportive counseling, each family receives educational materials tailored to their individual needs, such as advice on the prognosis and staging of the disease and management of emotional and behavioral difficulties that may Back to school for lifelong learning arise. Patients also receive counseling To treat Alzheimer’s disease, the education offered on financial, legal, at the Penn Memory Center is just as important as driving, residential any pharmaceutical prescription. and community care service issues. In addition to the resources provided, Families are also introduced to the diagnostic follow-up visit provides the many research opportunities, an outlet for patients and families programs and services available to to have any of their questions and them at the Penn Memory Center. concerns addressed. Penn Memory Center clinicians and staff understand Mirna Negròn is the center’s primary that it is often difficult to hear a health educator who has provided diagnosis of Alzheimer’s disease or social work and supportive services mild cognitive impairment for the first at the Penn Memory Center since time, and health educators are there to 2000. She explains that a typical visit help families process the information. covers much more than the patient’s The ultimate goal is for the health diagnosis. educator to become the patient’s direct link to the Penn Memory Center and “I talk about healthy diets and the their clinician. importance of exercising, and I encourage patients to be socially, mentally and physically active. These are the things people can do to slow down disease progression and optimize healthy aging. I try to let our patients and their care partners know that they’re not alone and that there are resources available to them,” said Negròn. newsletter of the penn memory center Even after the visit ends, the center’s health educators continue to work with families as needed to provide information and advice. For Negròn, maintaining contact with her patients for any future needs or concerns that arise is an important part of the diagnostic follow-up experience. spring 2013 page 2 “If a patient or family member thinks of something after they leave or if they have any questions, they can call me. I am available for them even if they just need to talk,” said Negròn. Helping patients at the diagnostic follow-up visit Robert Sweeney, husband of patient Antoinette Sweeney, came to the diagnostic follow-up visit with his daughter Susan and his son Michael. Though Mrs. Sweeney’s diagnosis did not come as a surprise to her family, her lack of insight into her own problems presented a more complicated case. Master of social work intern Sarah Windt was available to help support the family. “Situations like these demonstrate the importance of the diagnostic followup visit and of health educators who can tailor each visit to the patient and family’s unique needs,” Windt observed. and increased social activities as a way to help Mrs. Sweeney to accept her diagnosis. “I think Sarah’s insight into my wife’s problem and her suggestions about what could be done to make those things better were very, very helpful,” said Robert Sweeney. Continuing to develop the standard of care Greenfield is working with Negròn and the School of Social Policy and Practice interns to adapt the visit to offer a truly individualized approach for each patient. “We’re developing specific recommendations based on the patient’s unique cognitive needs, such as information on driving evaluations for patients who have spatial problems or specialized information on language difficulties for those having trouble with speech “I try to let our patients and their care partners know they’re not alone. There are resources for them.” approach to disease management but also for the innovative care and support we provide to caregivers and families affected by this illness— support that they have not found elsewhere,” Greenfield said. Dr. Steven Arnold, director of the Penn Memory Center, notes that the diagnostic follow-up visit remains a special resource. “Insurers and Medicare don’t reimburse this. We’re able to offer it courtesy of grants and philanthropy. Our goal is to make it part of the standard of care,” Dr. Arnold said. “If you’re unfortunate enough to have to go through dementia, the Penn Memory Center is probably the premiere place to go in the country, and we’re lucky to have them in the Philadelphia area. It’s been a very pleasant and rewarding experience,” said Iero. n r fo e g in eas nn Dis a l is os g l P r’s in gn nn dia he . pla r a e t ns cia me T ce fte whil ssio e E y r u an a an hei dv oon er’s disc se a an E n a Fi lz S H ossible,placeAlzs heimate inge disaenadinfglemgall and s ip a e d A a rm t p o n tak age rtic -st ers es leg fo nd y a a ly d c r, t is . he T an ith W ould ly-s an p ear f un uen eve an on on er’s l o seq ow at m ers ers im sh ear n c ith w C e of rso w able con g. H y th he p he p lzhe ga le A th pe ople cap nd kin sa lp t if t e A g d F in re ta arin Pe ten ts a ma erts he en tag Le op pa d re of pec n exp can y ev er-s o rep For ret s re an f a t e p io s is p t il n al s o d rg a cis al s. rp ay y’s ns n P e dic nin fam h la e u leg nce er’s cou so he ent inte t w mil d r a it n r s e e a w e M s – Mirna Negròn, Penn Memory Center health educator Windt is part of the center’s collaboration with the University of Pennsylvania’s School of Social Policy and Practice, a relationship that allows master’s level social work interns to work with Negròn in administering the diagnostic follow-up visit. Windt met with the Sweeneys and was able to suggest support groups, classes INSIGHT “Families have told us that they chose the Penn Memory Center not only because of our state-of-theart diagnostics and comprehensive newsletter of the penn memory center a m a t d l, cu a r ca pe a n n st an en en isio ia o al p str an divo y— ared ex ysic fina soo l in st, to or dec nc g D e leg r of a mil rep as y ph eir s as cia tru ble age ial h na in fa e p d. th mbe th ent inan ing aila e-st anc uc ma to or Fi n in ar ine ss n m d f liv av lat fin l, lan beg a nu se rso ility s his lly a t a a an ill, a are n’s and e e p P ies are b ct fu eg re w es, erso re il e dis he e a affe ing ly re f L a t r m r h . iv n o t o e a a t e p h c ut a n e t ge ea ea m ns C en f s, th th alt d o tio th los an m es n tio er h s ca is y ch te ak eve ues help nt he rrie W oce q pli er’s uall his ipa d m ing Ce ca pr ic m lt can d R) ir ke co im ra . T rt an nn u EA ing A he r g arly o pa ing pla iffic ing the ma h AD g Alz ck o cle y t ak ial h d lann nd nd ealt es l( nA vic la ink bilit n m anc oug e p ’s a es a t h . rra te o r fe u h Se th r a isio fin lth anc er ish bou nts Re tit alt n & Ins He ma he dec and t. A adv heim ir w s a eme u ion al of in gal tan e, Alz the ion ng at n s d H uc atio ute an le por aris ith ify ecis arra Ed e N stit lth im ten w clar d d ial e a h s t In e of ople ies rme anc ea of nal f H Dis e tio t o pe mil fo fin ’s vic a en fa ell-in nd er er N rtm im A S a w re a he ep ca Alz .D A booklet about being diagnosed with Alzheimer’s disease or a related disorder ER ENT RY C VICES R E MO N M LTH SE N E A P E THE MS & H U.S GR A P RO or word finding,” said Greenfield. The center is also gathering data on how helpful patients and families perceive the visit to be. What Happens Next? e n a r r fa nt , m pla he d w um lp ge le th u im e is od ye oc he sug and orta ate , op h seq he rts ith t of or ose t ce go w g d an p pe l wit con Alz xpe d w tha and e his gn y t re a la in r c and nt’s im y S an e s an dea cial h a al e ose on tal pda edia re a s of lann ye ws tie It’s ry b inst he s w la pa . e e p t t a r to an suc edic iagn rly men d u ng Th rvic ce , a la te he out s v fo h in men fin ess m d ula g an arra gal se van ple Sta at t ied law n— eat ocu ain le a ln and ently artic linin ine re t io t d r h il a am en t ar ha at r d d ly m p ec am ca sic as ecal ec us lth ex fer sure re c d t situ n, o how ent io Leg le r ss— se d o ex alth . Ba uch dir r n ea dif en s a sta in atio nce equ se se. eop lne cau —t he ible s, s ce at H nts g to ishe der ges loc lue ubs ea e p s il to lth nd oss ent van th life are d e in s n w un han , re inf d s ag riou ted hea ial a s p um ad ure -of- ns nn gie d d n s a r c ce n c l o e c la te t, ppor ses, su imer’s s clas he r offer n on Alz topics. d io n-a enn nge The P wide ra e and brai a and diseas Cente latedementia ory rmat ng reof Created for you by others diagnosis Memwithof ainfo gi Do you have feedback on your diagnostic follow-up visit at the Penn Memory Center? Share your thoughts by contacting Felicia Greenfield, LCSW, at [email protected] or (215) 614-1828. spring 2013 page 3 Scientists, families and patients debate the link between anesthesia and Alzheimer’s disease by Lisa Bain B efore being diagnosed with Alzheimer’s disease in her late 70s, Doris Reimann’s active lifestyle included tennis, two different bridge clubs and water aerobics. Even as the disease progressed and she moved to an assisted living facility, she remained active and, in many ways, self-sufficient. But according to her daughter-in-law, Mary Beth, that all came to an end in 2011 when Doris fell and broke her hip. “She was in so much pain,” recalled Mary Beth. “The doctors said that without surgery her pain would continue, so two days later she had an operation to repair her hip. She woke up groggy, and by the next day her face was drooping and she could only mumble. We thought she had a stroke. We kept telling everyone ‘this is not her norm.’ But they all told us it was the anesthesia and that she would eventually come out of it.” A week later, Doris was transferred to a rehabilitation facility and eventually to a nursing home where she now lives. She never walked again except in physical therapy. She doesn’t remember the people in her life or that she was married for 50 years or that she has two sons. Mary Beth says her dementia increased tenfold after the surgery. While not all people experience such drastic cognitive impairments following anesthesia and surgery, stories like this are commonly heard by clinicians who care for elderly patients, said Dr. Steven Arnold, director of the Penn Memory Center. Even though it often turns out that patients had memory issues before surgery, family members naturally want a reason for their loved one’s rapid cognitive decline and they may seize on surgery as the culprit. Dr. Arnold gives their concerns credence. “There is a lot of clinical experience to support this,” he said. “Something indeed may be going on during surgery for many people, but what exactly happens, how often does it happen and does it actually start off or accelerate the process of age-related neurodegeneration like Alzheimer’s disease—those are still open questions in my mind.” INSIGHT Dr. Olga Achildi, a fellow in geriatric psychiatry at the University of Pennsylvania, has been combing through the medical and scientific literature to When he wakes up, will he be the same? get a better picture of what is known, and not known, about the effects of surgery and anesthesia on cognition. Dr. Achildi said that although there is a widespread perception that cognitive decline often follows surgery, the scientific evidence for such an effect is inconclusive. Moreover, many patients report no cognitive changes following surgery. In people with pre-existing Alzheimer’s disease, very little is known since such patients are often excluded from studies. But Dr. Roderic Eckenhoff, vice chair for research and professor of anesthesiology at Penn, said that while there are reasons to link both surgery and anesthesia to worsening cognition, the surgery itself may play a bigger role. Dr. Eckenhoff came to this conclusion after studying the problem in laboratory animals, an environment where he can separate out the effects of anesthesia and surgery. Anesthesia had been previously shown to cause lesions in the brains of mice that mimic those found in brains of people with Alzheimer’s disease, but the effects on cognition have been less clear. Anesthesia can also affect the inflammatory response, exaggerating it in some cases and dampening it in others. Meanwhile, surgery has been shown to trigger a strong inflammatory response in the brain, which can lead to the destruction of brain cells. Dr. Eckenhoff ’s studies showed that anesthesia alone did newsletter of the penn memory center spring 2013 page 4 induce small declines in cognition, but “when we added surgery to the mix, it became a much, much more prominent feature,” he said. “And it also could be an interaction between anesthesia and surgery.” Dr. Eckenhoff hypothesizes that two “hits” are required to trigger brain damage following surgery. “You have to come into it with a pre-existing vulnerability,” he said. In the animal models he studied, genetic factors represented the first hit that made the animals vulnerable to the second hit, surgery. In humans, it is not known why some patients are vulnerable and others are not. Drs. Eckenhoff, Arnold and Achildi are planning a study with other Penn researchers to try to find markers of vulnerability in the blood, spinal fluid or on imaging tests that will predict who is at risk of complications following surgery or anesthesia. What to do if your family member needs surgery Six questions to ask your surgeon and anesthesiologist before surgery with anesthesia takes place in someone with Alzheimer’s disease or mild cognitive impairment Two more unanswered questions are whether certain types of anesthesia are less likely to cause problems or may even be protective and whether there are other ways of lowering the risk of a bad outcome. For example, some research suggests that injectable forms of anesthesia may be safer than inhaled anesthetics, possibly because these injectable anesthetics have anti-inflammatory properties. Others have suggested that using anti-inflammatory drugs in conjunction with anesthesia may be protective. Dr. Eckenhoff cautioned that data supporting these approaches is weak and more research is needed. For now, both he and Dr. Arnold agree that patients and family members should talk to their primary care physician, surgeon and anesthesiologist about their concerns before surgery with anesthesia takes place. Surgeons and anesthesiologists may not be aware of the latest research linking anesthesia and surgery to cognitive decline in people with Alzheimer’s disease. “The more patients bring it up, the more they will be forced to think about it and seek answers,” said Dr. Eckenhoff. Dr. Arnold suggested asking whether the procedure can be done under minimal or local anesthesia rather than general anesthesia. “You need enough to get through the surgery, but the depth of anesthesia and type of anesthesia may have an effect on cognition, so we think less anesthesia may be better.” And remember, he said, that the surgery is being done for a reason: to improve the patient’s quality of life. “You may have to put up with some side effects.” n INSIGHT newsletter of the penn memory center If the patient has cognitive impairment or Alzheimer’s disease, let the anesthesiologist and surgeon know about the diagnosis. Ask whether the presence of cognitive impairment changes how they would treat the condition. Ask the surgeon whether there are alternative procedures that would not require anesthesia. Ask the anesthesiologist whether there are alternatives to general anesthesia that might be safer, particularly for someone with cognitive impairment. If general anesthesia is necessary, ask if there are strategies that would lessen the risk of suffering the ill effects of surgery and anesthesia. Ask the anesthesiologist what is the usual amount of time it takes to recover from anesthesia, and prepare yourself that your loved one may take a little longer than that. If the surgery is necessary, ask the surgeon what steps the surgical team uses to reduce the risk of delirium after the operation. Lisa Bain is a freelance science writer with over 25 years of experience covering biomedicine, health and healthcare. spring 2013 page 5 Announcing an Alzheimer’s diagnosis One family’s journey from secrecy to openness by Colette Cassidy I still wonder what went through my mother’s mind the day we first heard the word Alzheimer’s. We had an appointment with a neurologist, and we were waiting to hear if her memory problems and confusion were actually being caused by something much more serious. “This could be Alzheimer’s,” he began. Mom looked at me and then back at him, clearly shocked and surprised. Neither of us spoke. Seeing our faces he seemed to backtrack, saying maybe it was just anxiety. He told us she was probably fine and that we should come back in a few months. It wasn’t until we were in the car that she turned to talk for the first time. “You are not to tell anyone about this!” she instructed, using the stern, adamant tone she had perfected as an elementary school teacher. “Well I have to tell Dad,” I said. She paused and softened, looked out the passenger side window, and then she looked back at me, maybe wondering if there was any way she could keep this from the man she had loved since she was a teenager. “Well I suppose we’ll tell Dad,” she said quietly, “but no one else!” The teacher was back. So I kept my mother’s secret. Only my father and I knew about the neurologist’s wavering diagnosis, and maybe because of that we slid INSIGHT in and out of denial ourselves. We would repeat phrases like, “He said it might be anxiety,” and we began anew trying anything that could help her memory and reduce stress. There were added vitamins, more exercise, more vacations, dinners and movies out. On bike rides or walks when Mom pointed out shortcuts I’d relay it to my father and say, “Someone with Alzheimer’s couldn’t remember shortcuts!” It shows how little I knew. Several years of this denial went by. My mother had been compensating for years, and my father and I had unwittingly joined her. If he was at a business meeting he made sure I could arrange my schedule to stay home with her. If we had an event I would get ready early so I could dress her as well. When she had trouble remembering her name we spelled it out for her. We looked the other way as she struggled to write the names of her own children. For a highly educated woman with meticulous penmanship and letter writing skills it was like ignoring the fact that Dr. J had forgotten how to play basketball. My brother Neil was the only one who finally said something. After a trip with my parents he emailed me with a question: “Do you think Mom has Alzheimer’s?” I told him maybe, but the doctor said it might be anxiety. I could tell that while I may have been fooling myself I wasn’t fooling him. Our cover was blown one fall night newsletter of the penn memory center Happiest with her family, 2002 Colette’s mother at her oldest son’s wedding when mom’s early onset Alzheimer’s brought on aggressive and chaotic behavior. She was belligerent and demanded that Dad leave their house because “this guy” was overstaying his welcome. That night my father and I realized two things very quickly: we still had a lot to learn about Alzheimer’s, and we could not keep my mother’s secret any longer. But how would we tell family and friends that Mom had Alzheimer’s? How do you convey what Alzheimer’s is, what it’s capable of and, most importantly, how do you figure out how to handle it? We decided a letter was best. Anyone who has dealt with Alzheimer’s knows it’s a complicated disease, a moving target. We felt putting everything in writing was the best way to share the information accurately and equally. It would give spring 2013 page 6 everyone time to absorb the news before responding, and maybe it would be therapeutic for my Dad, Mom’s primary caregiver, to document and share the story of her decline. We also wanted to give as many details about Alzheimer’s as possible, and I’m embarrassed to say that despite the previous years, it was the first time I went online and researched Alzheimer’s disease. I remember feeling foolish as I read the warning signs provided by the Alzheimer’s Association and the seven stages of the disease. My mother had been progressing through the stages in an almost methodical fashion, as if Alzheimer’s was checking off its accomplishments one by one. The first letter went to my brothers and sisters. I detailed the visits to the neurologist, the following years, and the night Mom suddenly didn’t know Dad or have any idea that they had been married for more than 40 years. I included all the information I had on Alzheimer’s—the warning signs, the stages—realizing that Mom was already at least in the middle and maybe even in the later stages of the disease. My letter was met with resistance at first followed by a lot of denial and some judgment. I heard it all: “She probably had a stroke,” “You have to get everything tested, it might be her thyroid,” “Why haven’t you been going to more doctors?” “Something like this doesn’t just happen, take her to the ER!” I realize that they were trying to comprehend in one weekend what I had lived for several years. I think that’s another reason why the letter was helpful: it gave people the chance to go back, read it several times, let it sink in and perhaps realize that they had also observed the symptoms. A friend later said, “Every family member goes through denial at some point. You have to let them process it in time.” A similar letter followed to extended family and friends. Since a lot of the reaction was, “What, is she just forgetful?” another letter went out detailing the disease. It explained that along with memory loss Mom was losing basic abilities, that she couldn’t be left alone and that Alzheimer’s affected her mood and behavior. I would strongly urge every Alzheimer’s family to write a letter like this. So many people lack a basic understanding of the disease, and it’s important to point out what your loved one is going through and specific ways they can help. When I’ve shared this story in the past, some have remarked, “It’s a shame your mother felt such stigma about Alzheimer’s that she didn’t want to tell anyone.” I don’t think that was it at all. I think she was just determined to hold on to life as she knew it—the life she had created with her husband, children and grandchildren. She was desperately trying to hold on to her memories. She was a smart, strongwilled woman, and she was going to give Alzheimer’s the fight of her life. It was difficult writing those letters, and it’s still difficult sharing our story. I still wonder if it’s the right thing to do, but my family benefitted greatly from other Alzheimer’s families who shared the lessons of their journey and helped us on ours. Mom benefitted because we were better able to care for her, keeping her in her own home until the end. She died 16 months after those first letters went out, just after her 69th birthday. The caregiver, 2010 Always loving and protecting, Dad took care of her every need. Little did we know she had less than two years to live. Once, before she died, I tried to get a sense from Mom that sharing her story was okay. I said, “Mom, we can do something that may help people who are very sick, but it means I need to tell them some personal things. What do you think?” Ever the civic-minded woman, she replied instantly, “Well if it will help others you must do it!” My mother asked me to keep a secret. In the end I couldn’t do it. I don’t think she would mind. n To learn more about the 7 Stages of Alzheimer’s disease, visit http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp. INSIGHT newsletter of the penn memory center spring 2013 page 7 Take one poem and call me in the morning The power of language arts to boost memory, imagination and delight by Deborah Fries E veryone who has stopped, mid-sentence, while the right word drifted into the ether knows that language can be an unreliable social currency. Even the masterful exercise of language does not ensure its permanence. Poets and novelists including Iris Murdoch, Agatha Christie, Louis Simpson, Jack Gilbert and Jack Agüeros have lost the skills and pleasures of verbal engagement as their dementia advanced. But for poet Gary Glazner and playwright Anne Basting, whose long-established verbal therapies have been adopted across the country, language remains an exciting medium throughout the lives of the people they serve—opening doors to memory, imagination, delight and connection. A 1997 grant from rival for one hour/ Poets & Writers October’s bright blue magazine made it weather.” Glazner has possible for Gary collected core poems Glazner to develop in Sparking Memories: and later launch the The Alzheimer’s Poetry Alzheimer’s Poetry Project Anthology, Project (APP), a and has gathered nationwide project works in Spanish, that aims to “spark German, Hebrew and memories with Yiddish for use in the poetry.” Since it was APP’s programs. introduced in 2004, APP has held 300 Another key programming sessions ingredient of Gary Glazner, founder of the Alzheimer’s Poetry in the U.S. and abroad this modality is Project, with a program participant in New Mexico and has provided enthusiasm, and Photo by Margaret Victor training for more than Gary Glazner is an 3,000 health care workers and family members who want to enthusiast. When I recently spoke to him by phone from learn Glazner’s techniques. his hotel room in Baraboo, Wisconsin, a long day hadn’t diminished his eagerness to discuss the work being done At the core of the project are 66 classical poems and rhymes through poetry. A decade after introducing his approach— that unlock echoic memory, that sensory memory where which utilizes performance skills, call-and-response poems learned in grade school and lyrics from 40 years of readings and the connection of hand-holding—Glazner is popular tunes are stored. Echoic memory is how the brain still a believer in its power. Over and over, he sees people retrieves the words to “How Much is That Doggie in the experience emotional release and brightened affect as they Window?” and the marching rhythms of “O suns and skies are caught up in familiar rhythms and retrievable lines and clouds of June/And flowers of June together/Ye cannot of verse. Routinely, he encounters men and women who INSIGHT newsletter of the penn memory center spring 2013 page 8 had formerly retreated into silence surprise family and caretakers by completing lines of verse, their sense memory magically unlocked by iambic pentameter. Glazner is a tireless advocate of improving quality of life through the arts, and he applauds the successful programs that are being used by his creative colleagues: Minneapolisbased Kairos Alive! dance company, the “Meet Me at MoMA” Alzheimer’s Project and programs inspired by the Canadian documentary, “I Remember Better When I Paint.” He’s especially impressed by the work being done at the Center on Age and Community at the University of Wisconsin-Milwaukee. Anne Basting, executive director of the center, has spent more than 15 years developing methods for incorporating the arts into long-term care, with a special focus on transcending cognitive limitations. Her approach, evident from the title of her 2009 book, Forget Memory: Creating Better Lives for People with Dementia, does not rely on memory. Basting is a scholar, educator and playwright who in 1998 developed an engaging improvisational method that taps into participants’ imagination rather than memory. The TimeSlips Creative Storytelling Project relies on visual imagery and facilitators to encourage people to express themselves and connect with others. The stories amuse and reflect the tellers’ understanding of human nature. Although group storytelling produces a particular kind of fun, Basting’s technique does not only succeed in a clinical setting. “Family caregivers can learn the basic components of using the imagination quite easily without having to take on any single program. The TimeSlips training is easy to do and designed for one-on-one as well as groups, and family members Anne Basting, creator of the are doing it as well. TimeSlips Creative Storytelling There is an initiative Project, at Luther Manor senior happening through living facility in Milwaukee the National Center Photo by Alan Magayne-Roshak, UWM for Creative Aging Photo Services that is bringing these basic tools from a variety of programs together for family caregivers. They are holding meetings in May, and I imagine their work will be done in a year,” says Basting. If caregivers choose to engage their loved ones through poetry or storytelling, Basting notes in Forget Memory that connection requires an awareness of how these processes work: “They invite us into the present moment, deep listening and occasional silence—a place that feels increasingly foreign in our multitasking culture of distraction.” For those interested in learning techniques used by the Alzheimer’s Poetry Project and the TimeSlips Creative Storytelling Project, both programs offer affordable online training for families, volunteers and clinicians. n Learn more about how creativity can make a difference www.alzpoetry.com – The Alzheimer’s Poetry Project: resources and video with registration for online training www.timeslips.org – Ideas and photos to start stories at home with online training and facilitation guidance www.youtube.com – Search “UWM Spotlight on Excellence: Anne Basting” to watch a TimeSlips group in action www.storycorps.org/initiatives/mli – StoryCorps’ Memory Loss Initiative with a downloadable toolkit and CD www.ursinus.edu – Berman Museum tours at Ursinus College are designed to spark discussion INSIGHT newsletter of the penn memory center spring 2013 page 9 Growing with dementia How dementia transforms patients and the families who care for them by Colleen Davis There is no way to erase the sadness of slowly losing a parent to dementia. But families who work together to survive the challenges of the disease may earn the solace of strong, respectful relationships that outlive the illness. This is the story of one family that tackled not only difficult care decisions, but also barriers from the past, to emerge as a stronger whole. S ince 2011, when I began writing about dementia care, I’ve heard too many sad stories. Some were of siblings who did little or nothing to assist their ailing parents. Others were of controlling siblings who took charge of all decisions and locked others out of caring for their parent. Situations like these create extraordinary pain for family members who are grieving the losses inflicted by dementia. Although most explain they’re trying to do what’s right, it’s easy for some to either sit still, or take action, without realizing how their behavior affects other family members. The best story would tell how—after their relative is gone—everyone involved could look back on their loved one’s dementia journey and say their contribution was useful. Families with a history of sparring may find this ending difficult to imagine. However, negotiating a collaborative process for delivering parental care can give families a chance to forge new relationships that will sustain them through challenges and craft a tale that ends with dignity for all. INSIGHT One family’s story My family may be lucky. My mother only had two children, so we had fewer parties conferring over difficult decisions. When Mom was first diagnosed with dementia, my sister and I were equally unprepared for her illness because she had always been so healthy and organized. Yet, even with just two of us, we sometimes disagreed about the right thing to do. The portrait of a lady The author’s mother, Janet Davis, in a portrait by artist Randall Sellers completed in early 2012. There is something about a parent’s illness that knocks siblings back into their childhood roles. When the parent is no longer there to mediate, relationships become even more complicated. Most adult children see caregiving problems from the perspective of their former family role. The eldest child expects to be relied on to manage crises and has a sense of duty shaped by the way he or she was raised and the responsibilities he or she was asked to fulfill many years ago. This “manager” impulse gets even stronger if the parent has assigned the child the legal duties of Power of Attorney. The title is imposing, and newsletter of the penn memory center it’s a job that most people assume with trepidation. Holding the Power of Attorney, however, doesn’t mean shouldering all burdens. Doing everything alone can add even more stress to care management, and this can threaten family harmony. Building a network of support All family members have at least one resource they can offer not only to their loved one with dementia but to each other. If one sibling is raising children and has no time to visit, they may still be able to cook a few meals and help out the person who provides spring 2013 page 10 daily support to the parent. Brothers who feel they lack nurturing skills can still help out with grocery shopping or even car maintenance for a sibling who is primary caregiver. When faced with the responsibility of taking a loved one to all doctor’s visits, even getting a car inspection can feel like a huge imposition. In our family, my sister lived hours away. I was the one who had space in my house and a flexible job that allowed me to care for Mom at home. My sister was able to use her experience in the health care field to help follow up on specialist appointments, MRIs, blood work and prescriptions. Hours of her time were spent tracking down lost bills and resolving insurance claims. Her attention to these matters gave me more time to focus on meeting Mom’s daily needs. As our mother’s illness wore on, we set up times for regular phone calls to trade observations on her changing symptoms. We added Mom’s best friend as part of our “consultation” group and kept her informed of what was happening so she could share information with Mom’s other friends. Every “big appointment” at the Penn Memory Center became a family event. A nice lunch or a walk followed each doctor’s visit. Decisions about medication and treatment were made collectively, usually after we each did research on our options. If we couldn’t be together to discuss a crucial matter, my sister and I used Skype. The most important part of the process was taking the time to talk. INSIGHT Breaking barriers Talking may not come easily at first. Caregivers can often feel overwhelmed and become possessive, feeling like no one else could have added insight about their loved one’s problems. Overachievers may also feel a need to manage everything. At the other end of the spectrum, those with no legal responsibilities may fear their offers of help will be rebuffed because family dynamics have always relegated them to the sidelines. Regardless of the family’s history, there is no better time for lowering these barriers than the moment when dementia sets in. Involving everyone in the care process allows each family member to create some good memories before the disease takes its final toll. Our mother’s losses brought us great grief and sadness, but dementia did not end our family joy. Together, my sister and I had many shared celebrations. She spent three-day weekends with mom and me whenever her work schedule allowed, and we invited friends to join us. When my mother’s illness outstripped my ability to care for her at home, together my sister and I looked at residential facilities. After two years of caring for Mom the prospect of moving her gnawed at my heart, but we were able to find a place that put my mom very close to my sister. She was able to pick up where I left off by making daily visits and paying scrupulous attention to all aspects of her care. In the end, both of us grew stronger by working towards the common goal of providing the best possible care for our mother. These bonds offer the truest example of a silver lining. n newsletter of the penn memory center Don’t let caregiving become a “family feud” Five tips for creating successful caregiving relationships Create a long-term care plan as a family team by consulting with medical, financial and legal professionals. The Alzheimer’s Association is a good resource for getting recommendations. For families who are geographically dispersed, a weekly online chat through Skype or Google Hangouts is a good way to connect. If one person is providing a large measure of support remember to give that primary caregiver a sympathetic ear. When you are stressed or angry, avoid talking about sensitive issues like money or legal matters. Treat each other with respect. Try to find even small ways that everyone can contribute regardless of their income, time commitment or distance. Colleen Davis is a freelance writer and author of a website for caregivers of loved ones with dementia, betweenthepondandthewoods.com. spring 2013 page 11 With gratitude, we recognize these recent donors Gifts received from mid-November 2012 through early March 2013 Gifts of $100,000 In memory of • Dr. Luigi Mastroiani Julius H. Caplan Charity Foundation Gifts of $25,000 The Hofmann Family Fund Progress against Alzheimer’s disease depends on your support for our research, programs and patient care. Gifts $1,500-2,500 Dr. Raman Mitra Mark Gilman The Snowden Foundation Gifts $1,000-1,499 A lzheimer’s disease threatens to become the largest and most costly public health crisis ever faced by our nation. Yet federal and other funding for our efforts continues to be cut back. This hard reality makes your tax-deductible gifts and bequests even more vital now to aid our research and nurture our advances. We are especially appreciative of those who have made gifts in these harsh economic times. We recognize donors here and on our website at www.pennadc.org. To view the list, click on “Gifts” and then “Our Proud Donors.” Planned giving, matching gift programs and a range of tax-advantageous structured giving approaches are also available. To learn more about how your support can strengthen and advance the work of the Penn Memory Center, please contact Irene Lukoff at (215) 573-0187 or [email protected]. Thank you. INSIGHT Gifts $500-999 Rosemary Woodland Steve and Misun Min George Nofer In memory of • Stanley Borzelleca Michele Fillippo Marissa and John Czop Linda and Michael Sulock Anne Marie and Evelyn Pastorius Pasquale and Mildred Giambrone Eugenia Romano Dennis and Susan Yankosky Elizabeth Czop Eugenia Riley Sharon and Anthony Sandor Donald Riley Mary Fabris Dorothy Seldis Amelia and William Irwin Elizabeth Cecil Gifts $250-499 In memory of • Betty Stephey James Malloy Gary and Carol Miller Phyllis and Rudolf Wertime Kathy and Russell Gehrt Robert and Jane Wingerd Marjorie Bogosian Gary and Bonnie Davis Charles and Diane De Mirjian Gary and Nancy Gembe Robert and Carolyn Scott Nancy Scott Harry and Eileen Stephey Carrie Pure William and Brenda Blair June and Lucille Balukjian Kenneth Hummel In honor of • Dr. Steven Arnold Stephen Kieran Neil and Barbara Ensley newsletter of the penn memory center spring 2013 In memory of • Charles Kominsky and Carl Segal Dr. Michael Amesquita In honor of • Dr. Christopher Clark Mr. and Mrs. Gerald Clark In honor of • Dr. R.J. Pignolo Nancy Lonsdale In honor of • Etta Mendelssohn Carol and Ieuan Mahony In memory of • Gerard Thomas Dr. Peter Thomas page 12 In memory of • Glenys Maia Michael Ferro Douglas Duer Mr. and Mrs. Robert Wilt In memory of • Graydon Cass Patricia R. Miller Revocable Living Trust Margaret Cass and Patricia Miller In memory of • J. Peter Hynes Suzanne and David Auten Shirley Kennedy Charles Lang In memory of • Glenys Maia Michael Ferro Douglas Duer Mr. and Mrs. Robert Wilt Gifts $100-249 Mr. and Mrs. Harold Schwartz In memory of • Beanche Manning Mr. and Mrs. Melvin Manning In memory of • Helen Foster Morgan Natalie Macy In honor of • J. Clay Smith, Jr. Andrea Williams In memory of • John Cornell Suzanne Cornell Eileen Ruggiero Gifts to $99 In memory of • Sherwood Shook Donna Searer Sarah Clark Ruth Helm Mr. and Mrs. Brent Peterson Mr. and Mrs. George Maalouf Almeda Henry Mr. and Mrs. Alfred Beers Edith Ferris Dave Harvey Chuck Walter Mr. and Mrs. Michael Iacocca Mr. and Mrs. Stephen Schecter In memory of • Mary Curtin Dr. Patricia Curtin In memory of • Dr. Eli B. Harmon Edward and Diane Hermenau Joanne Draghetti and Barry Salussolia Samuel and Gae Burchill In memory of • Morris Tragerman Steven Weiss In honor of • Rella Seidenfeld Gregg Geffen In memory of • Katharine Harkins Mr. and Mrs. James McCracken In memory of • Bernice Kane Lillian Cosenza In memory of • Dr. Henry Louis Ferguson Mary and Polly Dunn In memory of • Elizabeth Coyle Sandra McCoy INSIGHT In memory of • George Lane Lynne Santaniello and Jonathan Nutt In memory of • Jacqueline Bilker Michael Bilker In memory of • Nicholas Dimitri Dale and Selma Drucker In memory of • Peg Sheneman Tatum Anne McLaughlin In memory of • Ruth Failer Marc Price In memory of • Susan Cation D. Brady Franklin Your gifts make our efforts possible. w hen contemplating your own final arrangements or those of a loved one, please consider an obituary request that, instead of flowers, donations for Alzheimer’s research at the Penn Memory Center be made to: “Trustees of the University of Pennsylvania” (write “ADC-PMC” on the memo line) And mailed to: Penn Memory Center (Attn: Chelsea Brandt) 3615 Chestnut Street Philadelphia, PA 19104 Questions? In memory of • Joseph O’Brien Kathryn O’Brien In memory of • Emily Camardo Mr. and Mrs. Frank Camardo Call Chelsea Brandt at (215) 615-0975 Make a gift online It’s easy, quick and secure. Visit our website at www.pennadc.org and click on “Gifts.” You’ll be directed to the online donation form. newsletter of the penn memory center spring 2013 page 13 News & Events McKeown Foundation donation provides support for PMC caregiver programs by Chelsea Brandt he McKeown Foundation has donated $11,000 to support caregiver programs at the Penn Memory Center. Led by the infectious enthusiasm of President and CEO Joe McKeown, the foundation’s mission is Left to right: Suzanne Sawyer, Chief to foster care, support Marketing Officer of Penn Medicine, Felicia and research for Greenfield, LCSW, Dr. Steven Arnold, Joe Alzheimer’s disease. McKeown and Dr. Jason Karlawish After losing their patriarch, William J. McKeown, Jr., to Alzheimer’s disease in 1991, the family has worked tirelessly to spread awareness and garner support for the cause. “I’m fortunate to have my wife, daughters and family. My nieces, Michelle and Maggie, were so close to their grandpop. All six of my siblings are involved,” Joe McKeown said. The Foundation’s premier event is the annual William J. McKeown, Jr. Golf Classic “Fore” Alzheimer’s. This year’s Fore will take place May 20 at the Commonwealth Country Club in Horsham. On April 9, the foundation will also hold the “Score Against Alzheimer’s Event,” at Kitchen Bar Restaurant Café in Abington. The McKeown Foundation’s events are a sight to be seen—Joe McKeown sums them up by describing them simply as “a wow.” The awareness and support they raise for Alzheimer’s disease not only sustain programs dedicated to Alzheimer’s care and research, but they also uphold the memory of William J. McKeown, Jr. As the founder of one of Philadelphia’s largest beverage distributing firms, McKeown, Jr. was committed to charity involvement. The foundation strives to uphold this legacy. Photo by Mary Tong T The Penn Memory Center is pleased to welcome Nicholas Tsopelas, MD, as the center’s newest clinician. Dr. Tsopelas is board certified in geriatric psychiatry, and prior to joining the Penn Memory Center he completed fellowships at the Mount Sinai Medical School and at the Harvard School of Medicine. Born and raised in Athens, Greece, Dr. Tsopelas brings a global perspective. “I see Alzheimer’s disease as a global problem. With the population living longer we need more resources and a way to tackle the disease,” Dr. Tsopelas said. Research Coordinator Jessica Nuñez has been awarded as the recipient of the 2012 Healthcare Hero award through Penn Medicine. Jessica received the nomination from Lori and Keith Crammer, a participant and informant couple formerly involved in the bapineuzumab, or Bapi, study. For Jessica, receiving the Healthcare Hero award was a welcome pat on the back for her work as a coordinator at the Penn Memory Center. “After working here for so many years it shows that people trust me with their loved one’s care,” Nuñez said. On December 5, Steven Arnold, MD, Director of the Penn Memory Center, presented the lecture “Beta- “My grandfather was very generous and frequently gave back to the community. I like to believe we are continuing that tradition by using our family’s experience to help those currently facing the same struggles,” said Michelle Jenkins, granddaughter of the late William J. McKeown, Jr. For more information on getting involved visit www.mckeownfoundation.org. INSIGHT newsletter of the penn memory center spring 2013 page 14 Amyloid Neuropathology in Cognitively Normal Individuals: Preclinical Alzheimer’s Disease or Cognitive Resilience?” at the 51st Annual American College of Neuropsychopharmacology (ACNP) Meeting in Hollywood, Florida. The ACNP drew a crowd of 1,700 guests and experts to the forum, which allowed for the exchange of current research related to brain behavior-drug interactions. On December 11, Melissa Livney, PsyD, clinical psychologist at the Penn Memory Center, and George and Betsy Ulmer, a couple participating in Alzheimer’s research at the Penn Memory Center, were featured on NBC Nightly News with Brian Williams in the segment “Caregivers neglect their own health in order to look after others.” The number of Alzheimer’s patients, and in turn caregivers, in the United States is growing, and the segment focused on the stress that Alzheimer’s disease can cause for caregivers. “People need to give themselves permission to take care of themselves,” said Dr. Livney. “That’s what we focus on.” On February 7, 2013 Gov. Tom Corbett signed an Executive Order establishing the Pennsylvania Alzheimer’s Disease State Planning Committee at the University of Pennsylvania’s Perelman Center for Advanced Medicine. One in 12 INSIGHT Pennsylvania families are affected by Alzheimer’s disease in Philadelphia, and the committee will work to create a state plan to address the growing Alzheimer’s disease crisis in Pennsylvania. “Since Pennsylvania is the fourth ‘oldest’ state in the nation, it is critical that we unite to find a cure and help those who are living with Alzheimer’s disease, as well as those who care for them,” Gov. Corbett said. John Trojanowski, MD, PhD, and Jason Karlawish, MD, both represented the University of Pennsylvania at the 11th International Congress on Alzheimer’s and Parkinson’s Disease in Florence, Italy. Dr. Karlawish presented the lecture “Disclosing Imaging Data to the Unaffected” on March 5 and Dr. Trojanowski presented the lecture “Tau-Focused Therapies for Alzheimer’s Disease and Related Tauopathies” on March 8, both to international audiences. The Perelman School of Medicine and the Department of Medical Ethics and Health Policy at the University of Pennsylvania announce the creation of the Penn Neurodegenerative Disease Ethics and Policy Program. The new program will support research, education and training to identify and address the ethical and policy implications of advances in the diagnosis and treatment of neurodegenerative newsletter of the penn memory center diseases. Jason Karlawish, MD, Associate Director of the Penn Memory Center and an international leader in the neuroethics of aging, will serve as the program’s inaugural director. Karlawish describes the program as “first of its kind. I’m honored to serve as the inaugural director.” Roy Hamilton, MD, Penn Memory Center clinician, has been awarded the 2013 University of Pennsylvania Dr. Martin Luther King, Jr. Commemorative Award for Community Service. The award reflects his exemplary work in education and outreach programs aimed at providing mentorship to lowincome students. “We’re collectively trying to help students and trainees overcome the barriers that separate them from success when they transition from one step of career to the next,” said Dr. Hamilton. On April 8 and 9 the Institute of Medicine held a workshop titled “Accelerating Therapeutic Development for Nervous System Disorders towards First-in-Human Trials.” Jason Karlawish, MD, was in attendance at the workshop, which explored opportunities to accelerate the discovery and approval of new therapeutics for nervous system disorders in light of recent doubts on the ability of animal models to accurately predict effectiveness in humans. spring 2013 page 15 PENN MEMORY CENTER PERELMAN CENTER FOR ADVANCED MEDICINE PRSRT STD US POSTAGE 3400 CIVIC CENTER BOULEVARD PAID PERMIT NO. 352 2ND FLOOR, SOUTH PAVILION BELLMAWR, NJ PHILADELPHIA, PA 19104 The Penn Memory Center is pleased to announce new eight-week Cognitive Fitness classes On people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight. PUBLISHER Jason Karlawish [email protected] EDITOR, DESIGNER & WRITER Chelsea Brandt [email protected] 215-615-0975 WRITERS Lisa Bain Colette Cassidy Colleen Davis Deborah Fries OFFICES 3615 Chestnut Street Philadelphia, PA 19104 3400 Civic Center Blvd. 2nd Floor, South Pavilion Philadelphia, PA 19104 WEB www.pennadc.org l The Penn Memory Center is a National Institute on Agingdesignated Alzheimer’s Disease Center (ADC), one of only 30 such centers in the United States, and the only one in our tri-state region. l Our staff and programs are dedicated to research in Alzheimer’s disease, age-related cognitive problems, lifelong brain health and improving the wellbeing of our patients and their families. l Produced by the Penn Memory Center, part of Penn Medicine. We welcome and encourage your questions, comments, suggestions and gifts. PRINTING Fort Nassau Graphics The Penn Memory Center is pleased to announce new dates and updates for Cognitive Fitness, an educational program designed for older adults who want to improve their memory and thinking. Starting in June 2013, Cognitive Fitness classes will be shortened from 12 weeks to a new eight-week format, and tuition decreases will also take effect. These changes will make the course even more accessible to those with busy schedules who still want to learn the strategies, habits and behaviors that have been shown to boost memory and optimize brain health for older adults with normal memory, those with concerns about their memory or for people with mild cognitive impairment (MCI) who want to improve their memory and thinking. Put your cognitive wheels in motion with Cognitive Fitness. The new eight-week program is based on empirical research and will provide education on lifestyle choices shown to be beneficial for successful aging. It combines strategies to help make up for memory loss, specialized cognitive stimulation software designed to enhance speed and accuracy of thinking and individualized wellness plans. Goals of the program include increased independence, sharpened focus and memory, improved communication in relationships and the practice of effective coping mechanisms. Early enrollment for summer 2013 is now open. The summer course will run from June 3 through July 26 and will take place at the Perelman Center for Advanced Medicine at the University of Pennsylvania from 10 a.m. to 1 p.m. on Tuesdays and Thursdays. Other upcoming classes will be offered: l l l Fall 2013: September 16 – November 4* Winter 2013: November 11 – January 10* Winter/Spring 2014: January 27 – March 21* *Two class locations will be offered for each session. One will take place at the Perelman Center for Advanced Medicine at the University of Pennsylvania, and another course will be offered at a soon-to-be-announced location in the Philadelphia suburbs. For more information or to register, contact Felicia Greenfield at (215) 614-1828 or [email protected].