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MiscellaneousResources for Individuals with Early Memory Loss
| From Erica DeFrancesco, on December 30th, 2009 at 11:50:14 AM |
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More often than not, when a person is given the initial diagnosis of dementia, that person may have experienced memory loss for years prior to that diagnosis. It is not uncommon for individual with early memory loss to dismiss their forgetfulness or to mask their memory loss in hopes that it will go unrecognized. If they do seek resources, they often find that there is a gap in services offered for individuals with EML.
If you were working with a client struggling with his memory, your options might be to refer him to a local senior center or an existing adult day program. Unfortunately, neither of those choices are desirable to the person with EML. At your organization, you may have had individuals with early memory loss decline to attend your adult day program because they felt like outliers.
The Alzheimer’s Resource Center is excited to launch the new MindFULL Café, an early memory loss program which will begin to narrow the gap in services for individuals with EML, which will begin in January 2010. It is imperative that we capitalize on our creativity to expand services that can be offered to this unique population. An especially powerful and creative program based out of Rochester, Minnesota, is called HABIT (Healthy Action to Benefit Independence and Thinking); it is a 10-day intensive outpatient program for people with mild cognitive impairment and their care partners (http://www.mayoclinic.org/psychiatry-rst/memory-training.html). What other innovative resources are you aware of for individuals with EML?
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Education and Training"To Whom I May Concern"
| From Kelly Papa, on October 23rd, 2009 at 10:50:28 AM |
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When I first saw the title “To Whom I May Concern” I thought that there was a typo. I was curious why they would have missed such an important edit, isn’t the phrase usually “to whom it may concern?” I soon learned that they had not made a mistake.
“To Whom I May Concern”, was developed by Maureen Mathews RN, PhD. She developed this interactive theater program for people living with early stages of dementia. Ms. Mathews works with small groups of people to write “letters” to their caregivers about how it feels to live with dementia. The participants then read the letters as a theatrical performance. Ms. Mathews has a video clip of a performance on her web site. It is powerful to people describe how they felt about becoming so forgetful, big worries, and what they need people around them to know.
There was one letter from a woman who described the pain she felt each time a professional caregiver said the words “Alzheimer’s disease” without taking into consideration her feelings. “Voices that are lost/silenced through the shame or embarrassment of dementia, become strong and clear when shared with people that understand. Stories of determination, fear, anger and frustration are told with humor and love. These are the words that become the script of each unique performance.” (quote from www.towhomimayconcern.org )
| From Karyn Fryer, on December 2nd, 2009 at 11:08:01 AM |
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What a special story. I checked out her website and the clip was great.
Thanks |
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| Building empathy based care through creative expression
| From Kelly Papa, on December 17th, 2009 at 02:15:53 PM |
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| Creative expression through the Arts, Humanities and sensory stimulation enables individuals with dementia to communicate their feelings, identity and thoughts in new ways. Creative expression builds empathic connections through shared emotions, reflections and life stories. This model of empathy based care developed at the Alzheimer’s Resource Center offers dignified, meaningful ways to enjoy time, evoke memories, build relationships and create a sense of belonging. Please follow this link to read more about creative expression through the arts in an article we wrote for Advance for Long Term Care Management: http://long-term-care.advanceweb.com/Article/The-Art-of-Dementia-Care.aspx |
| Down Syndrome and Dementia
| From Kelly Papa, on March 12th, 2010 at 12:17:00 PM |
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Down Syndrome and Alzheimer’s Disease
Last year I had the honor to be asked to present at Connecticut’s Department of Developmental Services Conference on Aging. I met so many truly dedicated individuals who work with people living in group homes and in the community. They asked me to speak about how to care for people with Down Syndrome (DS) who are developing Alzheimer’s disease (AD).
Did you know that people with DS develop a dementia that is almost identical to AD? The main difference in people with DS is the early age at which it presents. Usually in late 40s or early 50s. According to Dr Norberto Alvarez, the reason why AD is more frequent in individuals with DS is unknown. His research stated that markers for AD, in individuals with or without DS, are linked to increased deposits of amyloid beta. His research can be found at http://emedicine.medscape.com/article/1136117-print This reference also describes many assessment tools that can be used to follow and measure changes in individuals with DS and AD.
Dr Alvarez’s research has shown that most people with DS will develop AD. This is due to the fact that most people with DS are living to the age of 40 and beyond, thus they are at a greater risk for AD. Studies have found that the frequency of diagnosis of AD in individuals with DS are:
• 10-25% of people with DS had AD by age 40-49
• 20-50% by age 50-59
• 60-75% when older than 60
Signs and symptoms of AD in people with DS are similar to that in people without DS. There is a decline in ability to perform daily tasks, confusion, forgetfulness, disorientation, wandering, exaggerated behavioral traits, and changes in daily routines including sleep patterns and eating. When the person with AD has advanced to mid-stage they are totally dependent for ADLs. By this stage symptoms include eating and swallowing disorders, gait disturbance, the person’s communication is drastically reduced, they have minimal social activities, and may experience increased behaviors. In the end stage of AD the person will need complete and total care. There is minimal to no communication, unless communication techniques and approaches are used.
Young people with DS who have advanced AD may require skilled nursing care. Education on DS for the nursing home staff is an important leadership role. Collaboration with group home case workers can help nursing home staff learn more about the person they are caring for, their unique needs and their individualized plans of care.
The professionals at the conference this week were all very interested in discussing: What type of care would we need to plan for at each stage of this disease? How can we “build a plan” to care for people with DS and AD? I urged them to use their clinical expertise to build their plans of care, but to also find ways to remain in the moment. Learn what is special about each person they are caring for. Find ways to bring joy to their days, with songs, music, prayer, animals, hobbies, walks outside and food. The more you learn about the person the better your “plan” for them will be. Also use the approach of “being present” and having empathy for those we care for. I once heard a speaker say “If you met one person with Alzheimer’s disease, you have met one person with Alzheimer’s disease.” Each person comes to their disease with a lifetime of individuality, memories, wisdom and wishes. It is with hope, education, research and empathy we can build the best plan to care for their person centered needs.
Do care for people with DS and AD in your home? What experiences have you had with developing plans of care? What information would help you?
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| Down Syndrome and Dementia
There are no comments at this time.
| Early Onset Alzheimers Disease
| From Kelly Papa, on October 23rd, 2009 at 10:34:42 AM |
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After reading the book Still Alice by Lisa Genova I feel the overwhelming urge to tell everyone I know about how powerful it is. The story was about Alice, a 51 year old Harvard Professor, diagnosed with early onset Alzheimer’s disease (EOAD). The story takes you through her shattering experiences in loss, helplessness, fear, loneliness and hopelessness. It shares her and her family’s courage to fight for every memory her mind held and the dignity she deserved. Although a fictional story, it was so heartbreakingly real that I feel I have a new insight into how people with Alzheimer’s disease feel. EOAD is the frightening reality of an estimated 500,000 people who are diagnosed in the United States.
According to the Alzheimer’s Association early onset Alzheimer’s disease affects people in their 40s and 50s. Like Alice in the book, EOAD affects people who are under the age of 65, with young families and jobs.
The book Still Alice offers us an opportunity to learn more about this progressive and degenerative disease, while also developing empathy for the person who is living with it. As individualized as we all are, so is the experience of being diagnosed with Alzheimer’s disease at any age.
People who have EOAD and their families are in need of long term care, education, support groups, and day care. | From Karyn Fryer, on December 2nd, 2009 at 11:09:30 AM |
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| What a powerful book. Everyone with a family member friend or realtive suffering from dementia should read this book. It will give everyone who reads it a new perspective and important insight. |
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| Empathy for family members
| From Kelly Papa, on October 23rd, 2009 at 11:00:07 AM |
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As many of us do, I have both a personal and a professional connection to Alzheimer’s disease. Professionally, as a Nurse and as an Educator, I teach professional care givers about dementia care: the details of the disease process, how to approach residents who have confusion, how to prevent combative behaviors, how to help the person find joy filled moments, clinical issues, and most importantly, how to promote person centered care.
Personally, I lost my Grandmother to Alzheimer’s Disease. I watched my Grandmother progressively forget, fail, die. I believe that Alzheimer’s Disease is one of the worse diseases a person could get! It takes away so much: your memories, your family, your functioning.
I was in nursing school when I learned that my Grandmother had Alzheimer’s Disease. Prior to the diagnosis we knew something was wrong, but we were not sure of exactly what. My Grandfather cared for her in their home and my father was always close by when he was needed. I watched my family try so hard to care for her needs and keep her safe. Alzheimer’s disease was a foreign land to us. We had no personal experience with the disease process or knowledge as to what the future held for my Grandma. Eventually she moved into a nursing home for skilled nursing care. I vividly recall the daily stress my family suffered due to the “unknowns” of the disease. We worried about leaving her at the nursing home and reassured my Grandfather that she was safe and well cared for. He was heartbroken that she was there, and not at home. I will forever remember feeling so sad for my Grandfather. He died days after my Grandmother did. My family believes it was from a broken heart.
Alzheimer’s disease affects so many people in different ways. An entire family is affected and suffers, while watching their loved one slip away. This is why it is so valuable that we learn as much as we can about how to promote dignity for people who are faced with so many uncertainties as they suffer through the journey of this disease. As a granddaughter I was touched by this situation very differently from my father, grandfather and everyone who loved Grandma. In what ways do you think the different perspectives can impact care? How as professionals do we use our personal experiences to develop our empathy for the lived experiences?
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| S.A.F.E. Responses in Crisis Situations™
| From Kelly Papa, on December 17th, 2009 at 11:33:11 AM |
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For the person with dementia, reasoning and language are limited and communication often becomes behavioral. Individuals with dementia may behave in challenging ways, attempting to fulfill their unmet needs. S.A.F.E. Response Techniques in Crisis Situations™ offers caregivers strategies to reduce anxiety and agitation and how to respond safely to combative or aggressive physical behaviors.
The core of the S.A.F.E. Response Techniques in Crisis Situations™ techniques recognizes that there are many reasons why an individual may become distressed but only a few ways to express distress. For example, if a person with dementia is experiencing pain you may see them show signs of their distress by through a variety of nonverbal cues such as their facial expression, moaning or an aggressive event. If a person with cognitive impairment becomes overwhelmed or frightened they may show their distress by a combative behavior such as grabbing or shaking a person who gets close to them. Professional staff, such as nursing assistants, become at risk for physical injuries when these event occur if they are not given the knowledge they need to know how to keep themselves and the person with dementia safe in times of distress.
By using best practice communication and approach techniques you can prevent aggressive incidents and injuries. It is essential that staff are trained to know how to prevent aggressive outburst and what to do if, despite using a correct approach, a resident grabs, punches, bites or chokes. The program, S.A.F.E. Response Techniques in Crisis Situations™, teaches staff in all departments techniques to keep themselves as well as their residents safe and calm. This program also teaches staff members to react with knowledge not fear when a crisis situation does occurs.
Here are some valuable tips on what you can do to prevent or relieve anxiety, fear and aggression:
• Use communication techniques such as validation, speaking slowly and leaving time to respond
• Approach the person from the front so they can see you, offer your hand, stand to their side to respect personal space
• Understand their likes, dislikes and routines
• Watch for non-verbal cues
• Assess. Ask yourself these questions, using the acronym B.O.L.T. to help you remember:
• B-do they need to use the Bathroom?
• O-are their Oral needs being met
• L-are they lonely or frightened?
• T-are they tired or in pain?
• Person Centered Programs
• Avoid empty hand syndrome
• Determine: What is the person trying to tell you?
• Environment
• Leave the room for 5 minutes
• Redirect attention
• Identify the trigger
• Share the behavior with the care plan team
What other tips do you practice? Have you developed a communication technique or approach that helps a person who is experiencing distress?
For more information on strategies to reduce anxiety and agitation and how to respond safely to a combative or aggressive physical behaviors contact us to learn about opportunities to practice the S.A.F.E. Response Techniques in Crisis Situations™.
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