The philosophy of symbolic interactionism teaches us that there are items in a nursing care facility that are symbols of being sick, handicapped, institutionalized or even symbols of dying, the medication cart being one of largest of these symbols.  Mechanical lifts, blood pressure cuffs, medical professionals, uniforms, schedules, meal trays, wheel chairs, nurses' station and utility rooms are all reminders of being sick, they are images of a hospital.  As we all move towards a culture and atmosphere that reflects a change in culture, these are all practices we should consider to change. 

I was fortunate to get to visit the Green Houses of Tupelo Mississippi with my Leadership AAHSA fellow class.  While there I was so impressed by how in these small homes they had locked medication cabinets in each person's room.  This helped the environment feel more like the home it should feel like.  The nurse there would pour and provide the pills in the privacy of the person's room.

I am looking to hear from you, do you have any ideas as to how to re-think the medication cart systems in long term care.  What are you doing to creatively make the delivery of pills more person centered?  What alternatives are working for you or didn't work? 

Fishing is one of those experiences that connects our mind, body and nature.  We all have at least one memory of going fishing with our father, having friends who told tall tales about fishing or at the least we are interested by the unique equipment and techniques fishermen use to catch that lunker! 

It is so much fun to go on a fishing trip but sometimes, for whatever reason, when a trip to the local river to go fishing is not  possible it is fun to have some fishing alternatives!   I am excited to share with you a program that Dawna Cappello a TRA designed and found to be a great experience for the residents with dementia she cares for. 

"Going Fishing Program"

Created by: Dawna Cappello, TRA, with guest Michael Cappello, husband and fisherman      

Program: To engage, stimulate, and empower residents utilizing fishing gear, including but not limited to:  large saltwater fishing reel, fresh water fishing pole with reel, fishing bobbers, safe fishing lures (such as rubber worms, NO HOOKS!), tackle box, rubber boots, pictures of fishing boats, pictures of fish, shared fishing stories and quotes, and requests for help, assistance, advice, tips, and personal fishing stories from the residents attending the program. This program was designed with the intention of sparking memories, promoting participation, and providing enjoyment to all residents.

Presentation: All residents were invited, encouraged, and assisted to participate in the 30 minute group or later individually during a one on one visit. 

After introductions, the residents were asked by Dawna and Mike to help with a very important task.  While holding the large salt water fishing reel out in front of her, Dawna presented the reel and asked the residents to help Mike make sure it will work when he goes out fishing today.  We explained that since this is a saltwater reel it needs to be lubricated in order to spin properly, and once the grease is put on the reel, it needs to be spun at least 500 times for the grease to work into all of the crevices.  We let the residents know that if we didn't get their kind assistance, we would never get this job done in time for Mike to go fishing, either that or our arms would break, whichever came first. 

After a laugh, Dawna went around the circle in one direction asking residents to hold the large saltwater reel with one hand and spin with their other.  Each of the residents was asked to spin the reel 10 to 20 times, whatever was good with them, because any help is appreciated.  The residents were encouraged to spin the reel however they would like, we let them know that there is no wrong way.  At the same time, Mike went around the circle in the opposite direction with a fresh water fishing pole and reel that has a red and while bobber attached to the end of the fishing line.  He assisted the residents with a short cast of the fishing line (only a couple of feet out into the middle of the circle) and asked them to hold the fishing rod with one hand and reel in the bobber on the end of the fishing line in with the other hand.  All residents were validated with gratitude and sincere confidence building compliments such:  "Thank you so much for helping us,"  "You must have strong arm muscles to be able to spin this reel so well,"  "It shows that you have done this before," and/or "I could never tell that you have not done this before." 

Once each of the residents participated in both activities, Mike and Dawna showed the residents pictures of Mike holding up large fish that he has caught, as well as pictures of the boat he caught them in.  Also, each resident was able to view and touch a small clear tackle box with colorful bobbers and safe rubber worm lures inside of it.  When the pictures and tackle box were no longer a hit, Mike told a touching fishing story about when he was ten years old and went fishing with his dad.  Followed by us asking the residents to share any fishing stories that they would like to share.  In addition we told fishing quotes hoping that residents would know them and even finish the sentences for us.  Finally, we ended the program by asking the residents for any advice or tips on how Mike could catch the big fish today. 

Results: It was obvious from the moment any of the residents saw the fishing gear that they were engaged; as evidence by the interest, curiosity, and enjoyment responses shown, including:  smiles, pointing, facial expressions, questions ("what do you have?"), acknowledgement of what we were doing, accepting to assist in our requests, and actively participating in the requests, above and beyond expectations. 

Specifics: Each of the residents who participated in these groups held and spun the large fishing reel using both hands and held the fishing pole in one hand and spun its reel with the other. Most residents completed these tasks by themselves, but a few did happily with encouragement and assistance, such as by us guiding their hand to the reel or pole and initiating the spinning motion and by utilizing the hand under hand technique.  In fact, most residents knew exactly what to do when the reel was placed in front of them.  It was like an automatic response reaction for them to reach for, hold, and spin the reel. Male and female equally, including those who never fished.  Many of the residents who said they never fished responded exactly as residents who have fished their whole life, they just mentioned how their father, husband, son-in-law, or other family member fished, and that is how they know how to do it.  While the residents were holding and spinning the large reel with Dawna, most of them counted out loud as they spun the reel, some residents spun the reel very slowly and calculated, and other residents spun the reel as fast as they could.  All of the residents were engaged, stimulated, and showed enjoyment during and upon completion of their contribution to the important mission.  Regarding the task of assisting the residents to cast the fishing pole utilizing the pole and bobber set up, the residents were exciting during the entire activity.  Just seeing the bobber reach the top of the pole validated attainment within most of the residents.  Many of the observing residents actually cheered on the resident who was reeling; as evidence by their clapped, hooting, and acknowledgement of success when the bobber reached the top of the pole.  Several residents asked if they could do it again!  Once each resident completed one or two tries with the reels and pole they each actively viewed and responded to fishing pictures.  The residents commented to our pictures with responses such as, but not limited to, "Wow!"  "Where did you catch those?"  "Holy cow, they are almost as big as you!"  "I've caught fish that size," and "Yeah, my son-in-law catches those."  In addition, each resident actively view, touched, and responded to the tackle box and lures.  They noticed and verbalized the different bait options and colors, as well as actually touched the rubber worms and bobbers.  A couple of the residents did not want to touch the "gross" rubber bait, but they looked and laughed.  Only a couple of the residents shared personal stories and quotes of their own, however they all listened intently to ours when we shared and showed much interest in what we were saying as evidence by their eye contact, facial expressions, head nodding, agreements, comments, and questions.  And the advice given by residents on how Mike could catch the big fish today was, "try hard,"  "fish long,"  "use big bait!" and "don't take me, I'm not lucky." 

Conclusions: Both the lower functioning and the higher functioning residents showed engagement and enjoyment as evidence by their reactions, responses, positive interest, and by the majority of residents who actively participated in all portions of the program.  These activities provided our residents with cognitive, sensory, tactile and visual connections and experiences.

Future ideas: To increase program time to accommodate discussion time. Suggestions included adding paper, plastic, or rubber fish to be attached to the end of the fishing line before the resident reels it in and possibly a mini pool for added affect.     

We are all always looking for new creative ideas to share with our residents. Do you have any creative activity programs that you too can share?  A program that brings nature indoors when we can't get outside because of weather?  Did you have great feedback from an activity that connected people from the community with your residents?  I am hopeful that you will share any ideas that you have here on this blog.  

People frequently ask, "How could I find out if I am going to get Alzheimer's Disease?" 

Scientists are working hard to find ways to detect biomarkers that indicate who is at risk for developing Alzheimer's. The earlier Alzheimer's can be diagnosed, the more effective treatment can be to slow the progression of the disease. A recent Swedish study found biomarkers in cerebrospinal fluid. 

Click here to read the article:http://health.msn.com/health-topics/alzheimers-disease/articlepage.aspx?cp-documentid=100240906 

Are you looking for new and innovative ways to train staff? Staff members are regularly faced with challenging situations that require a high level of knowledge and critical thinking. Now, more than ever, it is essential to offer meaningful and effective staff development programs. 

The most meaningful training programs are ones that inspire staff to think differently about the work they do. The best way to do this is to offer a variety of training opportunities that are both formal inservice and informal on-the-job training. Time is a valuable resource in long term care. There are many creative ways to educate staff in short time frames. It is necessary that inservices and training opportunities for staff are held that reflect their time constraints. It will take the time to plan ahead to make your training program comprehensive and creative. 

How can you turn a dry or repetitive inservice topic into a meaningful learning opportunity that is mindful of time constraints? Here are some tips.

• Consider the learning environment.
• Reflect on who the learners are? How do they learn?
• Gather all the informational resources you can on the topic being taught.
• Get creative! How will you make this inservice memorable?

Click here to read the entire article titled Sharing Knowledge from the special edition for DONs. 

Nursing assistants in long-term care are at a high risk for injuries due to job related activities. This is why it is vitally important to ensure that staff members are trained in safe lifting, transferring, body mechanics and the skills to prevent people with dementia from becoming aggressive or combative. 

We have found, here at the Alzheimer's Resource Center, that by using dementia based 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^TM, 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.

Recently, I was teaching the S.A.F.E.^TM program at a conference focused on "Safe Lifting."  At this conference there were speakers who shared their approaches to preventing injures; such as using "no-lift" type policies and by buying equipment to lift residents.  My S.A.F.E. Responses in Crisis Situations^TM presentation complimented the other presentations by sharing how to move a person with dementia who may be afraid of the lift equipment, combative or even in pain. It was at this conference that  I had the privilege of meeting Anna and Nina.  They shared with me their experiences in staying safe, and injury free, while caring for people with dementia and various challenging needs. I asked them if they would be willing to share their experiences with you. Here is Anna's story:

"My name is Anna.  I am 34 years old, five feet tall and weigh 118 pounds.  I have been a C.N.A. for eleven years in a skilled facility.  Why am I stating all of these facts?  I have been injury free all of these years.  I have taken care of all different kinds of residents. Alzheimer, Dementia, and Bariatric are some of them.  I would like to share some of the safety skills that I have found work for me in keeping my residents and myself safe.

Our Facility has very good equipment.  We are constantly in-serviced on the usage and safety measures on each piece of equipment. If the equipment is broken, we have an equipment repair book on each unit.  We write in the book and our maintenance person looks at the book daily, fixes it if able, and signs off when it is fixed.  We are in-serviced on using good body mechanics and demonstrate transfers and changes of position.

Each morning when I come to work, I receive report from my nurse with a copy of the C.N.A. cards for the plan of care for each resident.  If I have a new resident I will ask questions such as, "can you turn, can you wash your hands and face, can you walk, and most of all, are you in any pain when you move?"  I have had residents become fearful of transfers with me because I am so short and small, so I earn their trust to make them feel safe. I never transfer or ambulate anyone that I do not feel I can do safely. I will always get help.  If a Resident can't be transferred according to plan of care, I report it to the nurse.  The nurse involves PT and another assessment is done on that the transfer.

I have taken care of Resident's weighing from two hundred to four hundred pounds safely.  Our facility has a bariatric hoyer lift that we use.  Our policy is to use two people for all hoyer lift transfers, but if I need to use more, I do.  It keeps me safe from injury.

We have all been trained to use gait belts for transfers and ambulation.  Sometimes a Resident will become combative with this device.  I talk to them and explain in a soft tone what it is and how it is used.  I will put the gait belt on myself so they can see how it is used and that it does not hurt.  I have the resident hold the gait belt and feel it.  If this does not work, I will leave for a while and come back to try again and this usually works. If not, I will report it to the nurse, and other interventions are considered.

I have taken care of many residents with Alzheimer's.  It is more of a challenge to maintain safety for all involved in their care.  I have two residents with Alzheimer's that I take care for at this time.  I will call one "Mary".  Mary does not like to be approached with directions.  I always approach her to the side; speak in a low even voice, "Hi Mary, its Anna."  I sing every thing to her and she sings with me. Meanwhile, I am able to do her care.  The singing calms her.   If she becomes combative with this approach, I change the subject.  She loves babies so I talk to her about babies, and finish her care.  If Mary says, "Enough", I know that it is time to stop, so I will stop her care and come back to finish her. 

I have another resident named "Helen," and she can be very combative with care.  I always approach her the same way each day.  I always say, "Hi Princess, this is Anna," and hug her.  She opens her eyes, but does not reply, and does not become combative.  Face washing is scary for her.  I give her the washcloth.  She will throw it at me sometimes.  I keep giving it to her with simple directions and eventually she will wash her face.    Every day I give her a drink of Gatorade first thing in the morning.  One morning I did not have any to give her and gave her water.  She threw it at me.  I found some to give her and she drank it all.    Each day I put makeup on her and she puckers her lips for me.  I tell her every thing I am going to do for her and she stays calm most of the time.  One time Helen grabbed hold of my hair and would not let go.  I stayed calm and hugged her and said, "I love you Helen, it is me Anna," and she let go and hugged me back and kissed me.  I try to stay calm and this definitely helps in keeping us both safe.  I have learned that these are many of the techniques that keep my residents and me safe."

Anna Massa and Nina Thone are from the Hughes Health and Rehabilitation Home in West Hartford, CT. Thank you, Anna and Nina, for sharing your experiences.  Has anyone else had challenges with keeping staff S.A.F.E.^TM from injuries?  Please share your thoughts. 

One of the most memorable moments for me in nursing school, Saint Anselm College, was my first clinical experience.  We went to a nursing home in New Hampshire to practice our ADL care skills.  I remember being so nervous; at that point I had never performed physical hands on care before.  Who would I care for?  Would I do my skills correctly?  How would it feel to actually do ADLs with a person and not a mannequin?  The nurse that I was paired up with, was so patience and supportive.  She made my experience rewarding by sharing with me why she loves the work that she does.  She helped me learn skills by role modeling and by being there for me when it was my turn.  

At Saint Anselm College we were encouraged to do volunteer work.  I volunteered in a nursing home in the recreation department.  I would take residents for walks outside or sit in their rooms and talk for hours.  I loved to hear their meaningful life stories.  Their faces are etched in my mind; their stories remind me of the richness of the lives of the people we are lucky to meet and care for.

While in nursing school and while volunteering, I was a constant observer of the nurses and all of the staff in these facilities.  I watched them interact with residents, some with dementia and others without obvious signs.  I could feel how much they cared for the people who lived in that nursing home.  I loved to watch certain nurses who I felt embodied true professionalism.  I know that this experience had a huge impact on my life as a nurse.  I hope my role as a student, the flexibility of the time I had gave something back to the residents of these nursing homes. 

In my current role as an educator, I have the opportunity to meet and teach professionals in a variety of roles and care settings.  Professionals such as nurses, nursing assistants, social workers, physical therapists, administrators, dietitians, chefs, occupational therapists and recreational therapists all of who entered the field of geriatric care, whether in a  long term care, hospital or in a home care setting.  I love to discuss with these professionals why they were drawn to the work that they do.  Many times professionals share with me that their "crucible moment" (the event in their life that brought them to where they are today) was related to a personal experience, an internship for school or a relationship with an elder.  

Our industry is always seeking talented professionals.  I believe one of the ways to share meaningfulness of the work that we do is to invite students to fulfill their internship hours in our facilities.  You can also invite people who are seeking advanced degrees to spend time with the leaders in your facilities.  You will find that while the students are learning their professional skill they are also being inspired to enter our field.  They are learning about the wide spectrum of our industry including care for people with dementia, relationship building, leadership, multiple diagnosis, environmental considerations, nutritional needs and countless interventions. Students also benefit the people who live in your facility because they usually have to complete a project or research or have "extra time" that allows them to spent 1:1 with people.  At the Alzheimer's Resource Center we welcome students to learn our unique approach to care.  We encourage them to soak up the experiences of the staff and actively learn through multiple experiences.  We encourage students to journal daily to reflect on what they are living, questions they have, their philosophies and they people who they get to know.    

Do you have students in your facility?  Please share your experiences.

I urge you to welcome students to your facilities.  You have so much to teach them!  Now is a good time to contact local schools to set up visits for the upcoming year.  Be sure to introduce the students to all of your staff so they feel comfortable and welcome. 

Does your facility currently have openings for CNAs? Are you looking for ways to attract and retain talented professionals? Do you ever feel like there is a shortage of qualified professionals in long-term care? 

Over the past four years these questions have been studies by the Institute for the Future of Aging Services (IFAS). They have developed the Better Jobs Better Care program. 

According to their Web site (www.bjbc.org): "Better Jobs Better Care is a research and demonstration program, funded by the Robert Wood Johnson Foundation and The Atlantic Philanthropies. The program seeks to achieve changes in long-term care policy and practice that help to reduce high vacancy and turnover rates among direct care staff across the spectrum of long-term care settings and contribute to improved workforce quality." 

The Better Jobs Better Care web site is a great resource to learn more about ways to support your staff. They offer a free e-newsletter that shares stories of LTC professionals, tools, research findings, approaches to recruiting and retaining talented staff and other resources. There is a video called "Stand Up and Tell Them" which is a documentary of interviews with HHAs and CNAs who reflect on the challenges they face in their work. 

I urge you to visit this site and learn more about key research findings and how these findings impact your staff, residents and facility. 

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.

On March 31, 2009 the Connecticut Chapter of the Alzheimer's Association had their 12th annual dementia conference.  It was a wonderful day that united over 700 family members, people with dementia and professional caregivers. The day was filled with a variety of educational seminars including current research on Alzheimer's disease, ways to enhance dining for people with dementia, creative ideas for activities, and other valuable educational topics. I hope every attendee was able to take information to share with those closest to them.  I know I did! 

I was most moved by the last session I attended, it was titled "To Whom I May Concern", presented by Maureen Mathews RN, PhD.  She shared her experience of developing an interactive theater program for people living with early stages of dementia.  Ms. Mathews described how she 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 shared a video clip of a gentleman reading his letter to the audience.  It was so powerful to hear him describe how he felt about his forgetfulness, his worries, and his needs. We watched as he lost his place in his reading and was guided back by the other performers. 

She also read us a 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 http://www.towhomimayconcern.org/ )

Ms. Mathews purposefully shifted the title of her program from "it" to "I" to remind us to always focus on the person we are caring for and truly listen to what they need.  When we don't focus on the person we end up just looking at the tasks we need to accomplish. "To Whom I May Concern" is an innovative learning opportunities for dementia caregivers to reflect on how it must "feel" to have dementia.  Please take a look at the information on her web site http://www.towhomimayconcern.org/

"In American life, we think we are most free when we don't need anybody. Exactly what Alzheimer's represents is absolute dependency ...That's what we all need to learn ...how deeply we need one another."     - Stanley Hauerwas, Professor of Theological Ethics

One of my favorite web sites is www.memorybridge.org. It is from the Foundation for Alzheimer's and Cultural Memory. Their mission is to remind us that human beings needs connections with other people.  The web site offers stories, suggestions, tools and resources to "build a bridge" between people of all ages and a person with Alzheimer's disease. 

"You can't stay in your corner of the forest waiting for others to come to you. You have to go to them sometimes."

- A. A. Milne, Author (Winnie the Pooh)

"Following the light of the sun, we left the Old World."

- Christopher Columbus, Explorer

"If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen."

- Loretta Girzartis, Author

"They invented hugs to let people know you love them without saying anything."

- Bil Keane, Cartoonist

"Nothing is more revealing than movement."

- Martha Graham, Dancer

"The deepest principle in human nature is the craving to be appreciated."

- William James, Philosopher

"I don't know what your destiny will be, but one thing I know: the only ones among you who will be really happy are those who will have sought and found how to serve."

- Albert Schweitzer, Missionary

"All real living is meeting."

- Martin Buber, Philosopher

"Do not go where the path may lead, go instead where there is no path and leave a trail."

- Ralph Waldo Emerson, Essayist

"In American life, we think we are most free when we don't need anybody. Exactly what Alzheimer's represents is absolute dependency ...That's what we all need to learn ...how deeply we need one another."

- Stanley Hauerwas, Professor of Theological Ethics

"You can't stay in your corner of the forest waiting for others to come to you. You have to go to them sometimes."

- A. A. Milne, Author (Winnie the Pooh)

"Following the light of the sun, we left the Old World."

- Christopher Columbus, Explorer

"If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen."

- Loretta Girzartis, Author

"There is a Bridge" is used in many training programs with staff and students. It features families who are experiencing the journey of Alzheimer's disease. These families are very transparent about how it feels to watch their loved one become forgetful. The video also interviews experts such as Naomi Feil, M.S., A.C.S.W. who is also an Advisor for the Foundation. She is the Executive Director of the Validation Training Institute and the developer of the Validation technique, which is a method for communicating with severely disoriented older adults.

This video is an excellent inexpensive tool to use when teaching staff about Alzheimer's disease. It can be shown in its entirety or broken into clips and discussions.  his video offers approaches that can be used to connect with people with Alzheimer's disease as well as the lived experience perspective.  I believe that this video helps us enhance our empathic approach towards caring for all people affected by Alzheimer's disease. 

This week 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? 

Last night I finished reading the book "Still Alice" by Lisa Genova. After reading this book I feel the overwhelming urge to tell everyone I know about how powerful it is. The story was about a woman, Alice, who was a 51 year old Harvard Professor, when she was diagnosed with early onset Alzheimer's disease (EOAD). 

The story takes you through her shattering experiences in loss, fear, loneliness, helplessness 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. This link www.alz.org/national/documents/brochure_earlyonset.pdf is a great resource to help people with EOAD and their families.    

As leaders in long term care, we must educate ourselves and our staff on EOAD. The book "Still Alice" offers us an educational 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, home care, assisted living, education, support groups, and adult day care. Because these are services that are primarily used for elders, how does that make the person with EOAD and their family feel? Once we understand the needs of families struggling with EOAD, how can we help? 

Have you ever taken the time to sit with your residents and truly listen to their perspectives of life in a nursing home? As a gerontological nurse and as the granddaughter of a nursing home resident, I thought I knew what life was like in a nursing home. My opinion on what I thought I knew completely changed five years ago when I was working on my Master's thesis. 

My thesis was titled Coping Strategies of Elders in Nursing Homes. It was a Grounded Theory study in which I interviewed residents living in nursing homes. I asked (cognitively alert) residents how they coped with the transition from home into a nursing home. During the interview phase of my thesis research I was shaken by some of the answers elders shared with me. The methodology for my study dictated that I could only ask preapproved prompt questions and then just listen. Sitting and listening to the elders who lived in the home gave me so much to reflect on. I want to share with you some of the comments the interviewees offered in the hope that their words of wisdom will help us all learn to listen. (Please note that the nursing homes in which this study took place were all rated as high quality facilities.)

"I use to be the mommy and now I am a mummy, no one listens to me, no one asks."

"I hope I don't get like that one over there." (As she pointed to another resident.)

"I took care of my husband so he wouldn't end up here, now I am here."

"They are always running around, they never stop to listen."

"No one cares."

As a nurse and educator, I desperately wanted to help these people to cope. I wanted to teach them about dementia so they would understand the actions of the people they were living with. I wanted to do things to make them feel better. But maybe my desire, and the desire of others in roles like mine, the desire to do something instead of sitting and listening was what was causing some of their feelings? Is "care" listening or is it doing? Is it a merge of both? How do we so our empathy and help residents cope with their new home?  How can learning from the lived experience of cognitively intact elders, living in nursing homes, help us care for people with dementia?

The period of adjustment to a nursing home can be a traumatic experience for family members. Family members are challenged to learn their new role within the structure of nursing home life. They must take on practical tasks rather than the hands-on care tasks they had once provided. Family members struggle to cope with the loss of not being able to care for the loved one on a daily basis. 

Researchers agreed that families are able to help nursing home staff by educating them about individualized care needs. They also suggested that to improve the experience of the family around the time of admission, the nursing home staff should acknowledge and support the family's relationships with the resident. 

One way you can help residents' family members adjust is by offering educational sessions. This is an excellent way to not only educate but also build relationships, offer support and help families cope. Education topics that are helpful for family members include learning about Alzheimer's disease, how it progresses, what to expect, how to communicate, approach techniques and how to find meaningful ways to spend time together. 

Recently, after a Family Education Series, a daughter stated that she had wished she knew this information sooner. She didn't know the changes that were happening in her mother's brain. Learning more about the disease had helped her understand why her mother "did the thing she did." Some family members have never had the opportunity to learn about Alzheimer's diseases. At educational programs family members have an opportunity to meet and talk with other families. 

There are so many benefits to offering family education to your residents' family members. If you are looking to set up some education there are many ways you can approach it. You can purchase a video (may I suggest Accepting the Challenge by Teepa Snow) or you can ask a physician to speak. I my opinion the most effective educational programs are the programs that your own staff develop and present to families. In a previous blog I wrote about how much we learn from our family members and residents, their lived experiences can teach us empathy and understanding. I believe that by offering education to our residents family members we are also continuing to learn.

What ideas or experiences have you had with offering education for your resident's family members?

Picture this, you are sitting in a very comfortable puffy chair, you smell calming lavender, there is a fish tank filled with bright colored fish and you are listening to the sounds of the ocean. This is what it may feel like to be sitting in a Snoezelen room. 

The word Snoezelen comes from the Dutch words for to snooze or to sniff. Snoezelen is a multisensory stimulating therapy that was developed in the Netherlands to calm children who were mentally disturbed.  Over the past 10 to 15 years Snoezelen rooms have been used in nursing homes for people with dementia.  The goal of the room is to reduce aggression and apathy by using lights, sound, aroma, taste and things to touch.  It is a non-invasive fun approach to use the atmosphere as an intervention. The stimulation of the room has been found to reduce agitation and improve mood. There are multiple sites on the web that offer guidance to understanding the Snoezelen approach and locating the equipment for the room. 

Dementia care providers have offered many stories of the effects of the Snoezelen room on their residents with Alzheimer's disease. Some report the calming effect that the room has on their residents, some who even fall asleep in the room. There is a variety of ways the room can be decorated from fish tanks to glow stars, which are reminiscent of a flashback to the 1960s. 

A research study titled Behavioral and Mood Effects of Snoezelen Integrated into 24-hour Dementia Care by Van Weert Et Al. looked to determine if resident behavior would change if the Snoezelen approach was used daily by CNAs.  They found that the residents who received the Snoezelen approach were happier and related better to their CNAs then those in the control group. This article offers an extensive reference list that would be helpful to those looking to use the approaches. 

As I reviewed the research I began to remember the multisensory rooms I have toured. I remembered the fancy light shows on the walls, the fluffy soft wall hangings, the string lights that are so much fun to touch and the sounds of water flowing.  Many nursing homes have spent time and resources to develop and maintain their Snoezelen rooms. Some have shown me their rooms but have stated that they do not use them or that the staff members do not bring their residents to the room. 

My experiences with Snoezelen rooms have left me curious if there may be a larger question to ask ourselves.  What is going on in the environment outside the Snoezelen room? What does the unit/neighborhood sound like or look like? Is it noisy and chaotic? Is there too much stimulation that is causing people with dementia to become agitated and aggressive? Should we look towards making improvements to the overall environment before building Snoezelen rooms? Is there a way to bring the concepts of Snoezelen to the entire unit or neighborhood? 

Do you have a Snoezelen room in your facility? What has been your experience or outcomes? I would love to hear from you about your experiences. 

This week CMS rolled out their 5 Star Quality Nursing Home rating system, and USA Today and the Associated Press have published stories about it. There are large debates going on about this system.  There are great concerns that the data it reflects is flawed. Providers have found that the information is inaccurate and may be misleading to consumers.  Most providers agree that it is a good idea to find a way to rank nursing home quality. But is 5 Star the answer?

The 5 Star system offers family members an easy method to understand the quality of the care in the facility.  But does it offer enough information when making the very hard decision to place a loved one in a nursing home? Are the areas of quality, that this system ranks, detailed enough or could the information be false or misinterpreted? 

Larry Minnix, President and CEO of AAHSA, stated that there should be two types of nursing homes "the excellent and the non-existent." I agree with Mr. Minnix, all nursing homes should strive to be a high quality person centered place for elders to live or they should not be able to have people living there. Will CMS's 5 Star Quality Nursing Home rating system force low quality homes to improve their care, safety and staffing?   

What do you think?  What experience have you had this far with the new rating system?