Family Resource Guide
Transcription
Family Resource Guide
Family Resource Guide Who We Are Alzheimer’s Services of the Capital Area is a local non-profit organization. Our mission is to make a significant difference in the lives of those coping with Alzheimer’s disease in our community. Many of our programs and services are free to the public and are funded by individual and corporate contributions as well as grants. Who We Serve Our ten-parish service area includes Ascension, Assumption, East and West Baton Rouge, East and West Feliciana, Iberville, Livingston, Pointe Coupee and St. Helena parishes. How We Can Help Some of the programs and services that we provide are Charlie’s Place Respite Center, Caregiver Network Meetings, Lunch-N-Learn and Sharing The Journey Educational Programs, Safe Return Patient Identification Program, Caregiver Respite Reimbursement Program, a Resource Library, telephone HelpLine, family consultations, LGBT Liaisons, Louisiana Required Dementia Care Training for Professionals, Memory Café for the Early Onset Alzheimer’s Program and the annual Walk/Run to Remember. How To Contact Us We are located at: 3772 North Boulevard Baton Rouge, LA 70806 (225) 334-7494 or (800) 548-1211 Email: info@alzbr.org Website: www.BRhope.com Alzheimer’s Services of the Capital Area does not discriminate on the basis of race, color, national origin, creed, marital status, sex, disability, age, gender identity or sexual orientation in its programs and/or activities. 2 What is Alzheimer’s Disease The most common form of dementia, Alzheimer’s disease is a progressive and fatal brain disease that destroys brain cells, causing problems with memory, thinking, and behavior which is severe enough to affect work, lifelong hobbies or social life. There is no cure. National statistics (2011) report one in eight over the age of 65 and one in two over age 85 are affected by the disease. 10 Warning Signs of Alzheimer’s Disease Memory loss Difficulty performing familiar tasks Problems with language Disorientation to time and place Poor or decreased judgment Problems with abstract thinking Misplacing things Changes in mood or behavior Changes in personality Loss of initiative Photo Tate Tullier, Tate Tullier Photography 3 Programs and Services HelpLine Information Phone Line (225) 334-7494 or (800) 548-1211. Information and referral by phone Monday through Friday 8:30 AM to 4:30 PM Education Programs Lunch-N-Learn, Sharing the Journey, In-Service Training & Service Learning, state required Dementia training and other programs provided throughout the year on topics related to Alzheimer’s disease and other dementia-related disorders. Education Conference A day-long program each spring providing continuing education for professionals and caregivers. Resource Library Books, videos, and other educational materials that can be checked out. Safe Return ID Program A patient identification program to promote safety for memory impaired individuals who may wander. Respite Care Services Designed to give caregivers a break. Choose from Charlie’s Place Respite Center or a reimbursement program. Charlie’s Place An award-winning social model respite cen- ter designed to give caregivers a needed break from caregiving responsibilities, as well as give the affected individual a purposeful day of fellowship and activities (See page 10). TLC (Tender Loving Care) for Caregivers Social events for both caregivers and affected individuals. November Awareness Activities National Alzheimer’s Dis- ease Awareness Month, a variety of educational and/or support programs are offered throughout the month. Speaker’s Bureau Staff and/or volunteers participate in community Health Fairs and Exhibitions as well as offering Presentations and training throughout the ten-parish service area. Cause to Remember One hour sessions held year-round to inform who we are and what we do in the community. Memory Café Early Onset Alzheimer’s Program An outlet for socialization, education and fellowship among individuals with 4 Early/Younger Onset Alzheimer’s under the age of 65. Website Visit the website at www.BRhope.com for regular commentaries, news, blog and informational material. Caregiver Network Support Group Meetings Monthly meetings lead by trained facilitators which provide caregiver mutual support and practical caregiving techniques. Carelink Volunteers via the phone who lend a sympathetic ear and innovative solutions to caregiving dilemnas. Emergency Preparedness and Disaster Manual A compre- hensive handbook listing resources, support agencies, and caregiving strategies in dealing with individuals with Alzheimer’s and/or dementia in emergency/disaster situations. Home Safety Caregivers of people with Alzheimer’s disease often need to look at their homes through new eyes to identify and correct safety risks. Creating a safe environment can prevent many stressful and dangerous situations. What you can do: Make sure that the home has adequate lighting. Dimly lit corridors and stairs present particular hazards and need to be well lit. Place night-lights throughout your home. Use childproof latches on kitchen cabinets and any place where cleaning supplies or other chemicals are kept. Remove locks on bathroom and interior doors to prevent the person from accidentally locking himself/herself in. Label medications and keep them stored securely. Supervise taking prescription as well as over-the-counter medications. Make sure knives, lighters, matches and firearms are safely stored and out of reach. Keep walking areas clear of tripping hazards such as area rugs or electrical cords. Limit the use of potentially dangerous appliance and electrical equipment. 5 Communication Alzheimer’s disease and dementia-related disorders can gradually diminish a person’s ability to communicate. Those who are memory-impaired have difficulty expressing thoughts and emotions, as well as understanding others. Some ways to improve communication are to: Be sure that you have the person’s attention. Make eye contact, reduce surrounding distractions such as the television, radio, and loud conversations nearby. Help orient the person. Call the person by name and tell them who you are. Do not argue or correct the person if they give wrong facts or information. Keep it simple. Use short sentences, speak slowly, and allow the person time to process what you are saying. If you need to give instructions, give one at a time. If the person does not seem to understand, do not keep repeating yourself. Instead use another tactic or try again later. Treat the person with dignity and respect. Be sure that you stay calm. If you get frustrated, the person you are communicating with will pick up on those feelings. Pay attention to the emotion behind what is being said to you. Often the feelings being expressed (sadness, anxiety, fear, happiness) are much more important than the words being said. Assist but don’t pressure. If the person is struggling to find a word, offer one, but be sure that the words that you offer are correct. Do not assume you know what the person is trying to tell you. Ask questions that may be answered “yes” or “no” rather than pressuring the person to come up with facts. Accept that the person is responding at their level of Photo Aaron Hogan, Eye Wander Photo capability. 6 Wandering Wandering is one of the most frequent and challenging problems that a caregiver can face. It can be caused by several factors including one or more of the following: medication side effects, stress, agitation, anxiety, inability to recognize people, places and objects, fear arising from misinterpretation of sights and sounds, and desire to fulfill former obligations, such as going to work or looking after a child. What you can do: Enroll your family member in The Safe Return Program. This nationwide program assists in the identification and safe, timely return of individuals with Alzheimer’s disease and other dementiarelated disorders who wander. The program includes identification products such as bracelets or necklaces and clothing labels. Make sure that the person carries some form of identification at all times. Discreetly label the clothing with the home telephone number. Keep a recent photograph or videotape of the person. Keep doors locked. Consider a keyed deadbolt or an additional lock positioned out of view. Place warning alarms on external doors. Painting doors the same color as the walls can help to camouflage the doors. Posting a “STOP” sign or “DO NOT ENTER” sign on a door can deter entry. Place a dark colored mat by the front door and any doors that exit outside. The dark color can appear as a hole and discourage the person from crossing. Remember the clothes that your loved one is wearing that day so that you can inform the authorities if they need to be involved. Monitor daily activities with a “Baby-Monitor.” Having a receiver near their favorite chair or bed allows you to converse for reassurance while you are in separate rooms. Develop indoor and outdoor areas that can be safely explored. 7 Bathing, Toileting & Dressing For a person with Alzheimer’s disease and dementia-related disorders, the bathroom can sometimes be a confusing and frightening place. Additionally, choosing clothes and dressing can be frustrating. What you can do: Consider safety first for bathing • • Install grab bars for shower, tub, and toliet area Use non-slip mats and a bathing seat in shower and tub Prepare the bathroom in advance • • • • • Choose a regular and relaxed time of day for bathing and grooming Keep the bathroom a comfortable temperature Monitor bathing and grooming, while respecting privacy and independence Be flexible; sometimes a full bath is not necessary Removing or covering mirrors may help advanced stage individuals who don’t recognize themselves Plan ahead for toileting • • • • • • • • Make it easy to find the bathroom by leaving the door open or put a picture of a toilet on the door Learn the person’s unique verbal and non-verbal behavioral cues to signal when it is time to use the bathroom Remind or take the person to use the bathroom at regular intervals Dress the person in clothing that is easy to unfasten and remove Limit fluid intake before bedtime If accidents begin to occur, make sure that there is not an underlying medical cause such as a urinary tract infection or side effect from a new medication In the event of an accident, stay calm and try to overcome embarrassment or frustration Remember it is not the person’s fault Organize the dressing process • 8 Lay out proper clothes for the person; consider comfort, temperature, fit, and ease of donning • • • Provide a limited choice of outfits Simplify instructions for each item of clothing such as “Put on your shirt,” rather than “Get dressed.” Don’t rush the person Adopting Healthy Brain Lifestyles The total number of people with Alzheimer’s disease is expected to triple by the year 2050. There is a growing evidence that lifestyle can affect your brain health and risk for Alzheimer’s disease. Adopt a brain healthy lifestyle with these healthy choices. Diet/Nutrition Enjoy a diet rich in antioxidants, such as the Mediterranean diet. Eat a low-fat, low-cholesterol diet that features dark-skinned vegetables and fruits; foods rich in antioxidants; vitamins E, C and B-12; folate; and omega 3 fatty acids. Exercise According to the Alzheimer’s Research & Prevention Foundation, physical exercise reduces your risk of developing Alzheimer’s disease by 50 percent. Exercise keeps the blood flowing and encourages new brain cells. Regular exercise - even walking 10,000 steps a day - can also slow further deterioration in those who have already started to develop cognitive problems. Mental Stimulation Learn a new skill or hobby, enjoy strategy games and puzzles, use your non-dominant hand, practice memorization. Stress Management Take long, deep breaths, practice guided imagery, schedule relaxation activities such as yoga, playtime with a pet, listen to favorite music. Socialization Build friendships and family networks, maintain meaning and purpose in life, vol- Photo Tate Tullier, Tate Tullier Photography unteer in the community, enroll in classes, develop hobbies and join support groups. Spirituality Most scientists acknowledge a strong mind-body connection, and various studies link spirituality with better brain health. Practice meditation, prayer, reflection, and participate in faith-based activities regularly. 9 The Alzheimer’s Services Respite Center Charlie’s Place is a program for individuals with mild to moderate Alzheimer’s disease or dementia. Programming at Charlie’s Place is designed to provide cognitive stimulation and social interaction. Activities include, but are not limited to, gardening, reminiscing, armchair exercises, music therapy, and pet therapy. Based on abilities, participants enjoy leisure classes and community service projects. Lunch is provided. The program offers families the opportunity to take a break from their daily caregiving responsibilities. Family caregivers are encouraged to schedule social activities, doctor’s appointments, shopping trips, or simply stay home and relax while their loved one is at Charlie’s Place. Charlie’s Place clients have the option of attending weekly, with a maximum of two visits per week. Potential participants will undergo an assessment to determine their ability to participate in the program. Charlie’s Place is a social model; no medical care is provided. There is a screening assessment and fee to attend the program. To learn more about enrolling in Charlie’s Place, please contact Alzheimer’s Services at (225) 334-7494 or (800) 548-1211. 10 Charlie’s Place was purposefully designed to look like a home. The socialization area invites clients to reminisce while looking through a coffee table book or chatting with a staff member or volunteer. Arts and crafts activities, puzzles and board games are some of the activities that occur in the socialization and activity area. Staff and volunteers welcome clients each morning in the foyer, then Photo Aaron Hogan, Eye Wander Photo join them in the kitchen (pictured right) for a cup of coffee or juice, and conversation to get reacquainted. Clients enjoy gardening, feeding the birds, barbeques and walking in our beautiful memory garden (pictured below.) Our Respite Care Coordinator plans each day to provide an array of stimulating and purposeful activities: word games, sing-alongs, discussion and intergenerational programs are included in the monthly calendar. 11 Caregiving The role of caregiving can be very stressful. Prolonged stress can leave the caregiver feeling powerless. Burnout touches many aspects of the caregiver’s life including emotional, social and physical well-being. Adopting a healthy lifestyle is important for caregivers to be able to care for themselves as well as their loved ones effectively. Here are a few ways to help make your caregiving more successful: Get a diagnosis as soon as possible. Consulting a physician can help to treat symptoms now and in the future. Know what resources are available to you. The Alzheimer’s Services staff will help you learn more about community agency resources, library and internet resources and educational opportunities. Photo Aaron Hogan, Eye Wander Photo Become an educated caregiver. As the disease progresses, new caregiving skills are necessary. Educating yourself can help you cope with the behaviors and personality changes that often accompany the disease. Get help when and where you need it. Doing everything yourself can leave you exhausted. Seek the support of family, friends and community resources. Use respite care services like Charlie’s Place to help you get the break from caregiving that you deserve. Take care of yourself. Watch your diet, exercise and get plenty of rest. Make time for doing things that you enjoy. 12 Early Onset - Memory Café Alzheimer’s disease appearance before age 65 is known as “early onset” dementia. Individuals diagnosed with Early Onset experience various problems emerging from work and/or home. They may also suffer a loss in relationships and have difficulty in marriage. Household income drops as they may be forced to leave work or worse are let go due to loss of skills and memory. Additionally, spouses often reduce their workload or quit their jobs to become fulltime caregivers, which places additional financial strain on the family budget. Most medical benefits and many social support programs do not provide assistance unless the person with Alzheimer’s is over the age of 65. Additionally, because of the loss of relationships, individuals with Early Onset Alzheimer’s feel somewhat isolated and/or embarrassed to share personal feelings and conerns. A social network with others experiencing the disease and similar issues is needed for them to sustain their quality of life. The Memory Café is an outlet for socialization, education and fellowship among individuals with Early Onset Alzheimer’s that provides resources in special-needs planning and directives which can help relieve at least some of the financial stresses the disease challenges bring to the indivduals and their families. The monthly scheduled meetings will have programming that benefits the indivduals, and input from the participants and their particular needs to assist in planning the agendas. Financial Advisors, Social Workers, medical professionals and other speakers will contribute to the content and interact in the program providing tips and guidelines for the participants in their journey with the disease. Additionally, The Memory Café will offer a structured program to stimulate brain health and memory. 13 Resources Alzheimer’s Services of the Capital Area/Charlie’s Place www.BRhope.com http://alzheimersservices.blogspot. com (225) 334-7494 (800) 548-1211 Social Security Online Shares information about benefits, policies & legislation www.ssa.gov www.medicare.gov Baton Rouge (866) 613-3070 (800) 772-1213 Alzheimer’s Foundation of America Focuses on care for individuals, with Alzheimer’s, family caregivers, and healthcare professionals http://alzfdn.org (866) 232-8484 (Toll-Free) Memory Matters Practice techniques that help adults in their senior years retain their memory. Brain teasers, puzzles & exercises www.yourmemorymatters.com Capital Area Agency on Aging Providing advocacy & specified services for seniors & persons with adult onset disabilities & their caregivers. www.capitalaaa.org (800) 833-9883 Louisiana SenioRx Linking seniors to pharmaceutical aid www.louisianaseniorx.org (877) 340-9100 Institute for Dementia Research & Prevention, PBMC Improving the quality of life for individuals in Louisiana by generating world class research programs focused on dementia prevention. http://idrp.pbrc.edu (225) 763-2973 LA Nursing Home Association (LNHA) Information & representation of licensed nursing homes in the state www.Inha.org (225) 927-5642 14 The Aid and Attendance (A&A) Pension Veteran’s Administration provides benefits for veterans & surviving spouses who require the regular attendance of another person to assist activities of daily living. http://veteranaid.org (225) 925-7268 The Alzheimer’s Store Products for people with AD and their caregiver www.alzstore.com (800) 752-3238 Family Caregiver Alliance A Clearinghouse on brain disorders, caregiver assistance and long-term care public policy www.caregiver.org (800) 445-8106 Louisiana Governor’s Office of Elderly Affairs including Ombudsman www.goea.louisiana.gov (225) 342-7100 Resources Louisana Department of Health & Hospitals www.dhh.louisiana.gov (225) 342-9500 LA Assisted Living Association (LALA) Primary voice for assisted living communities in Louisiana www.laassisted.org (225) 791-5811 LA Enhancing Aging with Dignity through Empowerment & Respect (LEADER) Transforming & promoting dignity in the culture of aging www.laculturechangecoalition.org (318) 235-5002 Administration on Aging www.aoa.gov (202) 401-4634 National Academy of Elder Law Attorneys, Inc. List of certified Elder Law Attorneys in each state www.naela.org (703) 942-5711 The Alzheimer’s Brain Normal & Alzheimer’s brain comparison www.alzbrain.org The Alzheimer’s Association Tips on caregiving, updates on research & treatments, & information on programs & services provided by local chapters. www.alz.org (800) 272-3900 Alzheimer’s Forum News, articles, discussion, diagnostic & treatment guide & more www.alzforum.org Cut here Please add me to the mailing list to receive important information on upcoming programs and events. (complete form below) Please send me an Alzheimer’s Services of the Capital Area Basic Information Packet. (complete form below) I am a healthcare service provider/professional. I would like to order more copies of the Family Resource Guide. Number of copies Please deliver packets to me at the address listed below: Name Agency (if applicable) Address City State Zip Phone Email 15 Corporate Partners Alzheimer’s Services of the Capital Area 3772 North Blvd. Baton Rouge, LA 70806 Phone: 225-334-7494 Toll Free: 800-548-1211 Website: www.BRhope.com Alzheimer’s Services 3772 North Blvd. Baton Rouge, LA 70806 PLACE POSTAGE HERE