{"id":28521,"date":"2020-01-08T10:18:16","date_gmt":"2020-01-08T17:18:16","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=28521"},"modified":"2024-08-05T13:16:48","modified_gmt":"2024-08-05T19:16:48","slug":"living-with-dementia-program","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/living-with-dementia-program\/","title":{"rendered":"A program to lessen the burden of dementia"},"content":{"rendered":"<div style=\"margin-top: 0px; margin-bottom: 0px;\" class=\"sharethis-inline-share-buttons\" ><\/div><figure id=\"attachment_28522\" aria-describedby=\"caption-attachment-28522\" style=\"width: 450px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-28522\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094228\/tiny-Dementia-1-Linda-an-e1578503588942.webp\" alt=\"Wife holds a sketch of her husband when he was 21 while he, who is living with dementia and now 80, sits beside her.\" width=\"450\" height=\"600\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094228\/tiny-Dementia-1-Linda-an-e1578503588942.webp 450w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094228\/tiny-Dementia-1-Linda-an-e1578503588942-225x300.webp 225w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094228\/tiny-Dementia-1-Linda-an-e1578503588942-113x150.webp 113w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094228\/tiny-Dementia-1-Linda-an-e1578503588942-200x267.webp 200w\" sizes=\"auto, (max-width: 450px) 100vw, 450px\" \/><figcaption id=\"caption-attachment-28522\" class=\"wp-caption-text\">A drawing of Kent Hamm at his fraternity at age 21 helps wife Linda remember the man as he was. Photo by UCHealth.<\/figcaption><\/figure>\n<p>On a sunny morning in mid-November, Linda Hamm rises from a couch in the comfortable apartment she shares with husband Kent in a Highlands Ranch retirement community. She steps into another room and returns with a framed drawing of a young man with neatly combed hair who looks into a mirror while adjusting his tie. Penciled in at the bottom of the picture are the words \u201cKent 12\/11\/60.\u201d<\/p>\n<p>\u201cThis is a fraternity picture of the man I married,\u201d Linda says.<\/p>\n<p>Kent Hamm, now 80, sits quietly in an armchair and gazes at the sketch of his 21-year-old self. Linda sets the picture down and retrieves a scrapbook stuffed with chronologically arranged photos and news clippings that document Kent\u2019s life with family and friends in small-town Louisiana, as well as her own.<\/p>\n<p>The thick binder is a work in progress: Linda continues to document the tangible memories of their separate lives and the partnership that spans nearly six decades. She and Kent met in 1960 as students at Louisiana Tech University in Ruston, married two years later, raised two boys and spent 45 years in the same home in a Houston suburb before retiring and moving to the Denver area five years ago to spend time with their four grandchildren.<\/p>\n<p>\u201cThe scrapbook shows his life, my life, and our life together,\u201d Linda says, spreading her hands across the pages.<\/p>\n<h3><strong>Deteriorating stages of dementia<\/strong><\/h3>\n<p>Linda is not merely reminiscing. She\u2019s preserving memories for Kent, who for several years has been changing before her eyes, his memory eroding and his personality altering unpredictably. He has <a href=\"https:\/\/www.nia.nih.gov\/health\/what-dementia-symptoms-types-and-diagnosis\">dementia<\/a>, a progressive brain disease that causes cognitive decline beyond what is expected with normal aging. <a href=\"https:\/\/www.uchealth.org\/diseases-conditions\/dementia\/\">Dementia<\/a> includes, but is not limited to, Alzheimer\u2019s disease. <a href=\"https:\/\/www.asha.org\/PRPSpecificTopic.aspx?folderid=8589935289&amp;section=Incidence_and_Prevalence\" target=\"_blank\" rel=\"noopener noreferrer\">An estimated 5.7 million people in the United States have the disease<\/a>, and the number is expected to increase as the population ages.<\/p>\n<p>Dementia is a challenge for Kent, who built a successful, half-century career in medical and technical equipment sales but is now mostly dependent on Linda and others to make decisions for him. But dementia has also caused great emotional turmoil for Linda in her role as caregiver \u2013 one she didn\u2019t anticipate filling. That\u2019s not unusual, said <a href=\"https:\/\/www.uchealth.org\/provider\/bennett-parnes-md-family-medicine\/\">Dr. Bennett Parnes<\/a>, medical director of the <a href=\"https:\/\/www.uchealth.org\/locations\/uchealth-seniors-clinic-anschutz\/\">UCHealth Seniors Clinic<\/a> on the <a href=\"https:\/\/www.uchealth.org\/locations\/uchealth-at-university-of-colorado-anschutz-medical-campus\/\">Anschutz Medical Campus<\/a> and an associate professor in the <a href=\"https:\/\/medschool.cuanschutz.edu\/geriatrics\">University of Colorado School of Medicine\u2019s Division of Geriatric Medicine<\/a>.<\/p>\n<figure id=\"attachment_28525\" aria-describedby=\"caption-attachment-28525\" style=\"width: 200px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-28525 size-medium\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094238\/tiny-Dementia-4-Bennett--e1578503744557.webp\" alt=\"profile of medical director of the Seniors Clinic.\" width=\"200\" height=\"300\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094238\/tiny-Dementia-4-Bennett--e1578503744557.webp 200w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094238\/tiny-Dementia-4-Bennett--e1578503744557-100x150.webp 100w\" sizes=\"auto, (max-width: 200px) 100vw, 200px\" \/><figcaption id=\"caption-attachment-28525\" class=\"wp-caption-text\">Dr. Bennett Parnes, medical director of the Seniors Clinic, Kent\u2019s primary care physician, helped to launch the Living Well with Dementia program. Photo by UCHealth.<\/figcaption><\/figure>\n<p>\u201cIt\u2019s hard for caregivers who have known this person who is in many ways a different person,\u201d Parnes said. \u201cPsychologically it is really challenging.\u201d<\/p>\n<h3><strong>Living with dementia<\/strong><\/h3>\n<p>Today, though, Linda and Kent have a helping hand from the Seniors Clinic through a program called Living Well with Dementia. The idea, based on a model called <a href=\"https:\/\/memory.ucsf.edu\/research-trials\/professional\/care-ecosystem#UCHealth-Seniors-Clinic\" target=\"_blank\" rel=\"noopener noreferrer\">Care Ecosystem<\/a> developed at University of California San Francisco, connects caregivers to a team of providers trained to address the medical, pharmacological, psychological and social problems caused by dementia.<\/p>\n<p>The Living Well with Dementia program receives funds from <a href=\"https:\/\/innovation.cms.gov\/initiatives\/comprehensive-primary-care-plus\" target=\"_blank\" rel=\"noopener noreferrer\">Comprehensive Primary Care Plus (CPC+)<\/a>, a Centers for Medicare and Medicaid Services effort that encourages primary care practices to develop innovative ways to improve patient care. Parnes said the support has allowed the Seniors Clinic to deliver integrated care to patients, and their caregivers, living with dementia.<\/p>\n<figure id=\"attachment_28524\" aria-describedby=\"caption-attachment-28524\" style=\"width: 200px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-28524\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094236\/tiny-Dementia-3-Adreanne-e1578503756565.webp\" alt=\"profile shot of Living Well with Dementia program's care team navigator.\" width=\"200\" height=\"300\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094236\/tiny-Dementia-3-Adreanne-e1578503756565.webp 200w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094236\/tiny-Dementia-3-Adreanne-e1578503756565-100x150.webp 100w\" sizes=\"auto, (max-width: 200px) 100vw, 200px\" \/><figcaption id=\"caption-attachment-28524\" class=\"wp-caption-text\">The Hamms receive regular help from Adreanne Brungardt, care team navigator for the Living Well with Dementia program at the UCHealth Seniors Clinic. Photo courtesy of Adreanne Brungardt.<\/figcaption><\/figure>\n<p>The linchpin of the Care Ecosystem approach is the care team navigator, who receives training in the fundamentals of dementia and maintains regular contact with caregivers and fellow team members. At UCH, that\u2019s Adreanne Brungardt, by trade a neurologic music therapist, who currently works with 43 families referred by their primary providers (the program has served 65 over the past year).<\/p>\n<h3><strong>Battling burnout as a dementia patient caretaker<\/strong><\/h3>\n<p>Caregivers referred to the program initially complete assessments, Brungardt said. She then makes a call that begins with a straightforward but lighthearted question aimed at understanding each caregiver\u2019s specific story: \u201cWhat made you say yes to me bothering you?\u201d<\/p>\n<p>Brungardt then makes a home visit \u2013 the Seniors Clinic is the only Care Ecosystem implementation site to include this feature \u2013 which helps her establish a trusting relationship with caregivers and patients. Monthly phone calls follow, with Brungardt listening to specific concerns, suggesting possible solutions and routing questions to other team members for additional help and advice. The program team also meets weekly to discuss patient and caregiver issues from different perspectives.<\/p>\n<p>The overall goal is to help caregivers avoid emotional exhaustion and burnout, Brungardt said. In turn, healthy and better equipped caregivers can help their loved ones more effectively.<\/p>\n<h3><strong>Unpredictable challenges with dementia<\/strong><\/h3>\n<p>That\u2019s no easy task, Brungardt added. People with dementia exhibit new behaviors over time, such as irritability, paranoia, and difficulty in ordinary tasks. The limited number of medications available treat only symptoms or occasionally slightly slow progression and have a host of side effects.<\/p>\n<p>\u201cThere is no miracle drug for dementia,\u201d Brungardt said. \u201cIt is a disease in the brain that doesn\u2019t just change memory.\u201d<\/p>\n<p>For example, a seemingly unremarkable event, like having a visitor, may trigger severe agitation in a person with dementia and spike stress and frustration in a caregiver. Loved ones looking for a solution often must find ways to communicate differently with their loved ones, Brungardt said.<\/p>\n<p>\u201cThe question for caregivers is, \u2018how do I change the environment and my own responses?\u2019\u201d she said.<\/p>\n<h3><strong>Early signs of dementia<\/strong><\/h3>\n<p>It\u2019s a challenge that resonates with Linda Hamm. Parnes diagnosed Kent with dementia two years ago, though he and Linda both say that in retrospect there were earlier signs of deterioration. For example, near the end of his last job with a Pennsylvania-based company for whom he worked 25 years, he began having trouble tracking his sales orders \u2013 something previously unheard of in that job or during stints with industry heavyweights like Fisher Scientific and GE.<\/p>\n<p>\u201cIt bothered me. I knew something was going on,\u201d Kent said.<\/p>\n<p>Still, after the move to Highlands Ranch, Kent didn\u2019t want to stop working altogether. He says it was in his blood; his dad sold clothing in Alexandria, Louisiana \u201cfor years and years and enjoyed it. I knew I wanted to go to work at six years old.\u201d<\/p>\n<p>He got a job at outfitter giant Cabela\u2019s Lone Tree outlet, working in several departments and finally as a greeter, but he says he had trouble remembering his schedule. Linda noticed that he began driving very slowly, a worrisome sign but one she chalked up to unfamiliarity with a new city. But she was more hard-pressed to explain his decision to cede responsibility for their finances to her.<\/p>\n<p>\u201cI was never involved in the finances,\u201d Linda said. \u201cHe had taken care of everything and was as sharp as a tack.\u201d<\/p>\n<figure id=\"attachment_28526\" aria-describedby=\"caption-attachment-28526\" style=\"width: 435px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-28526\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094240\/tiny-Dementia-5-Linda-an-e1578503637892.webp\" alt=\"A couple smiles together, the husband who is living with dementia.\" width=\"435\" height=\"500\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094240\/tiny-Dementia-5-Linda-an-e1578503637892.webp 435w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094240\/tiny-Dementia-5-Linda-an-e1578503637892-261x300.webp 261w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094240\/tiny-Dementia-5-Linda-an-e1578503637892-131x150.webp 131w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094240\/tiny-Dementia-5-Linda-an-e1578503637892-200x230.webp 200w\" sizes=\"auto, (max-width: 435px) 100vw, 435px\" \/><figcaption id=\"caption-attachment-28526\" class=\"wp-caption-text\">With assistance from Brungardt and the Living Well with Dementia team, Kent and Linda hope to stay in their Highlands Ranch retirement community as long as possible. Photo by UCHealth.<\/figcaption><\/figure>\n<h3><strong>New abnormal after dementia diagnosis<\/strong><\/h3>\n<p>The diagnosis of dementia provided an explanation for the changes but also ushered in a new time of uncertainty. Linda began to see that the troubling changes weren\u2019t going to subside.<\/p>\n<p>\u201cIt\u2019s been a journey,\u201d she said. \u201cAt first, it seemed like every day was a new problem. It was very frustrating for both of us.\u201d<\/p>\n<p>\u201cOne of the hardest things in dealing with dementia is that it is a progressive disease,\u201d that exacts an inexorable toll on patients and can wear down caregivers, Parnes said. \u201cYou don\u2019t first go through a rigorous training course on how to do it, you are just thrown into it. It\u2019s easy to get burned out,\u201d he added.<\/p>\n<p>Kent\u2019s dementia also intertwined with other problems. Parnes initially prescribed an anti-anxiety medication that Linda said settled Kent\u2019s emotions. However, he has back problems caused by spinal stenosis, and when he worked on his physical therapy, he began falling. Linda checked with a pharmacist with the Seniors Clinic who told her a side effect of the medication was weakness in the legs.<\/p>\n<p>At Parnes\u2019 direction, she weaned him off the medication, but that led to a personality change. He began resisting doing his exercises, brushing his teeth and shaving. Linda\u2019s frustration rose with each refusal.<\/p>\n<p>\u201cI was dealing with [the question of] was it more important to be his wife or his mother,\u201d Linda said. \u201cThings like that were getting in the way of our relationship.\u201d<\/p>\n<h3><strong>Caring for a loved one with dementia<\/strong><\/h3>\n<p>Parnes helped her through that as well, suggesting that Linda put his toothpaste on his brush and bring him his shaving razor instead of fruitlessly telling him to start the tasks himself. It wasn\u2019t easy advice to follow, she conceded.<\/p>\n<p>\u201cAt first I was angry that he wasn\u2019t doing it on his own,\u201d she said. \u201cI don\u2019t say anything now. It\u2019s part of getting ready in the morning.\u201d<\/p>\n<p>The demands of caregiving, however, took a personal toll. \u201cI\u2019ve given up my life and that was very difficult at first,\u201d Linda said. She had to abandon Bible study classes and committee work she participated in at their retirement community. Kent is uncomfortable in large groups, so they avoid parties, another painful change.<\/p>\n<p>\u201cHe used to be a wonderful host,\u201d Linda said, as Kent listened. \u201cWe would have large parties in Houston, then would wash the china and silver together before we went to bed.\u201d<\/p>\n<p>The parties were in their 45-year residence in tiny El Lago, Texas, a short drive from NASA. Neil Armstrong, Buzz Aldrin and dozens of other astronauts called El Lago home while the Hamms lived there.<\/p>\n<p>\u201cIt was an exciting place for our boys to grow up,\u201d Linda said. \u201cWe loved that home. We loved the memories of that home.\u201d<\/p>\n<figure id=\"attachment_28523\" aria-describedby=\"caption-attachment-28523\" style=\"width: 800px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-28523\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094232\/tiny-Dementia-2-Linda-an.webp\" alt=\"couple looks at a scrap book that helps the husband, who is living with dementia, remember things.\" width=\"800\" height=\"600\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094232\/tiny-Dementia-2-Linda-an.webp 800w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094232\/tiny-Dementia-2-Linda-an-300x225.webp 300w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094232\/tiny-Dementia-2-Linda-an-768x576.webp 768w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094232\/tiny-Dementia-2-Linda-an-150x113.webp 150w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2020\/01\/08094232\/tiny-Dementia-2-Linda-an-200x150.webp 200w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><figcaption id=\"caption-attachment-28523\" class=\"wp-caption-text\">A scrapbook of photos and clippings Linda has put together is another spur to memory for Kent, who has dementia.<\/figcaption><\/figure>\n<h3><strong>Creative problem solving<\/strong><\/h3>\n<p>While Linda worked hard to care for Kent, she said that for some months she felt that they were on a merry-go-round, with one challenge following another. For example, his personal trainer at the retirement home moved. That led to another fall and sent him back to a community physical therapist.<\/p>\n<p>\u201cI was so frustrated,\u201d Linda said. \u201cI like everything to be smooth. We\u2019d get over one thing and something else would crop up.\u201d She struggled to see Kent\u2019s path forward.<\/p>\n<p>The referral to the Living Well with Dementia program helped to change that. Brungardt called her to explain what would be involved, then made her home visit, which put Linda at ease.<\/p>\n<p>\u201cShe made me feel very comfortable,\u201d Linda said. \u201cI have confidence in what she says because she listens and asks questions.\u201d<\/p>\n<p>Brungardt\u2019s monthly calls are far more than chats. To illustrate, Linda pulled out a legal pad with a page full of questions she had readied for their most recent conversation. They ranged from financial queries to dietary issues to voter fraud \u2013 Kent had been contacted because his signature on his last ballot didn\u2019t appear to match with earlier ones. Linda covered the page with notes gleaned from Brungardt.<\/p>\n<p>\u201cSo many things that you just don\u2019t think about keep popping up,\u201d Linda said. \u201cBefore we hang up, I have a date on my calendar for the next call.\u201d<\/p>\n<h3><strong>Finding the confidence to handle dementia<\/strong><\/h3>\n<p>With Brungardt\u2019s help, Linda said she continues to be more accepting of the reality of Kent\u2019s dementia. For instance, she used to try to jump in and correct him when he told stories that got events out of order. Brungardt helped her to let that go.<\/p>\n<p>\u201cShe said what difference does it make if the facts aren\u2019t right?\u201d Linda recalled. \u201cI can stay in his conversation. I don\u2019t want him talking to a wall.\u201d<\/p>\n<p>A center that provides assisted living, skilled nursing and memory care is down the street from the retirement community, but Linda said she and Kent intend to stay at home as long as possible. She is much more confident that they can meet that goal because of the Living Well with Dementia program.<\/p>\n<p>\u201cI am hopeful because we have a support system that will help us with the problems,\u201d Linda said. \u201cI have told Adreanne, \u2018You have given us hope that we can make it through this.\u2019\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>On a sunny morning in mid-November, Linda Hamm rises from a couch in the comfortable apartment she shares with husband Kent in a Highlands Ranch retirement community. She steps into another room and returns with a framed drawing of a young man with neatly combed hair who looks into a mirror while adjusting his tie. [&hellip;]<\/p>\n","protected":false},"author":2143,"featured_media":28523,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[4750,708,3921,184,154,9171],"class_list":["post-28521","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-access-to-care","tag-adults-65-plus","tag-community-benefits-report","tag-neurology","tag-palliative-care","tag-senior-care"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.4 (Yoast SEO v27.4) - 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