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DEMENTIA CARE: DECISION TREE & GUIDE
Dementia Care: Decision Tree and Guide 2014
The Dementia Care Decision Tree To Help Caretakers of Loved Ones with Dementia Start%Here% Does%he/she%forget%any%of%the%% Can%he/she%safely%% Has%his/her%judgment%been%% following:% perform%daily%% affected?%Has%he/she%ever:% "What!he/she!is!doing!midway!! ac8vi8es%including:% "Taken!a!ride!from!a!stranger?! !through!a!task?! NO! "Moving!around!! YES! "Dressed!inappropriately!for!the!! "To!take!medica8ons?! !his/her!environment?! !weather?! "To!keep!up!with!personal!! "GeDng!dressed?! "Invited!strangers!into!the!home?! !hygiene?! "Bathing!or!showering?!! "Been!careless!with!sharp!! "To!turn!appliances!off!a YES! NO! Does%he/she%use%the%restroom% independently?% "Can!he/she!get!to!the!toilet?! Check%with%his/her%% "Without!accidents?! Does%he/she%exhibit%behaviors%% insurance%provider%to%see% NO! "Can!he/she!clean!up!a Home%with%family%care,% Assisted%living%or%home% communityIbased%care% with%24hr%supervision% Nursing%Home! Home%independently! or%adult%day%care! and%assistance! LSUHSC Occupational Therapy students Meredith Allen, Stephanie Allen, John Brogdon, Jamie Estess, Kristen Myers, and Daniel Waller created this decision tree under the faculty supervision of Barbara Doucet, PhD, LOTR, Tina Gunaldo, PhD, DPT, MHS, Shannon Mangum, MPS, LOTR, Jo Thompson, MA, CTRS, and Jan Jeter, PhD, MEd. It is based on the research and resources included at the end of this packet. 2014. 2 Dementia Care: Decision Tree and Guide 2014 + The Dementia Care Decision Guide Occupational Therapy in Dementia Care What is Occupational Therapy? Occupational Therapy (OT) is a healthcare specialty that works with people of all ages, diagnoses, and abilities with one goal in mind: to help people remain as independent as possible in the activities they want or need to do to live a happy and meaningful life. How can Occupational Therapists Help People With Dementia? OTs use their knowledge needs of the person. OTs can help and experience of people with dementia live as working with older adults to help people independently as possible for as long as with dementia. OTs view dementia as a possible and can train family members condition affecting a person’s daily in how to assist and support them. An activities. OTs can train family members, OT can evaluate the person’s function, formal caregivers, or people in the early home environment, and family stages of the disease in what to expect supports to determine strengths and with dementia and how to adapt weaknesses and make suggestions for environments and activities to the needed changes. Kindly visit https://www.surveymonkey.com/s/dementias to take a survey before reading the information in this packet. 3 Dementia Care: Decision Tree and Guide 2014 + Purpose of the Dementia Care Decision Tree The Dementia Care Decision Tree can be used to help caregivers make educated decisions about the care needs of their loved ones with dementia. The Dementia Care: Decision Tree and Guide is a research-based tool designed to lead caregivers to a decision for safe housing for someone with dementia. The decision tree can simplify the difficult decision process and help caregivers think about their loved one’s function, health problems, and available resources. The Importance of Daily Tasks When Making Decisions About Care Forgetfulness and memory loss are a part of normal aging, but for people with dementia, changes in behavior and function can happen quickly, leading to the inability to perform even basic daily tasks and self-care1. Activities of daily living refer to basic self-care tasks such as feeding, bathing, dressing, and using the toilet. More complex tasks needed to live independently include managing money, cooking a meal, cleaning the house, and taking medicines correctly. For people with dementia, quality of life can be affected by the ability to do daily tasks. A study of people with dementia found that as people needed more help with activities of daily living, their quality of life decreased2. 4 Dementia Care: Decision Tree and Guide 2014 + Care Options for People With Dementia Nursing Home Assisted Living What is a nursing home? What are assisted living facilities? Nursing Homes are described as the highest Assisted living facilities provide a housing level of care that one can receive outside of a option for seniors who do not require medical hospital. Most people with advanced care, but may need help with daily activities dementia reside in these facilities.3 such as bathing, dressing, and feeding.7 What do most nursing homes offer? What do most assisted living facilities § Advanced medical care4 offer? § Patient supervision by doctors § Minimal health supervision § Skilled nursing on site § Assistance with medication § Therapy services § Help with bathing, dressing, feeding, § Help with bathing, dressing, feeding, and daily tasks and other activities of daily living5 § Housekeeping, transportation, security § Leisure activities 6 Average cost of care: § Live with spouse § Semi Private Room: $77,380 yearly Average cost of care:8 § Private Room: $87,600 yearly § Private Room: $42,000 yearly Adult Day Programs Community-Based Care What is an adult day center? What are home health aides? Adult day centers provide a daily break for A home health aide is a person who can caregivers or allow caregivers who work to give hands-on help with feeding, dressing, 7 stay employed during the day . Centers can bathing, meal prep, medication also provide people with dementia time to management and other daily tasks. Aids are participate in meaningful activities, outings, under the supervision of a registered nurse.5 and socialize with others.2 Average cost of care:8 $20 hourly What do most adult day centers offer? § Counseling and personal care What is a home helper, home sitter? § Nutrition and leisure activities Sitters are people who help complete § Minimal health and medical services household tasks that cannot be managed 8 alone. They can provide care such as Average cost of care: cooking, cleaning or running errands. § $16,900 yearly § $65 daily Average cost of care:8 $19 hourly 5 Dementia Care: Decision Tree and Guide 2014 Caregiver Challenges Being a caregiver is challenging. The increased demands of caring for a loved one can lead the caregiver to experience anxiety, stress, burnout, or depression. Taking care of yourself is important—not only for you but for your loved one. In fact, the leading predictor of placement into assisted living or a nursing home is depression of the caregiver.10 The health of loved ones with dementia is strongly related to the well-being of their caregiver.1 Below are helpful local and national resources to help you as you care for your loved one with dementia. These resources offer tips, advice, and support for caregivers. Helpful Resources for Caregivers Poydras House Caregiver Support Group Caregiver.org Online Support Center New Orleans, Louisiana www.caregiver.org 504-897-0535 Contains information about caregiving Meets regularly to discuss issues related to for loved ones, including caregiver caregiving for people with dementia. education, online support for caregivers, and advocacy. Alzheimer’s Association Caregiver Center Compare Nursing Homes Online http://www.alz.org/care/ http://www.medicare.gov/nursingho Provides information on daily care, stages mecompare of Alzheimer’s and dementia, behaviors, Search results display nursing home and care options. New Orleans Chapter For support group information: 504-330-2426 6 Dementia Care: Decision Tree and Guide 2014 Help Your Loved One Stay Home Longer: Prevent Falls + Safety in the home is directly related and measured by falls:11 • Among older adults, falls are the leading cause of fatal and nonfatal injury. • Each year, one-third of Americans aged 65 or older have a fall. • Every 15 seconds, an older adult is treated in the emergency room for a fall. • More than half of all falls happen inside the home. • Falls with or without injury impact quality of life. • Fear of falling may cause people to limit activities and social participation. This can result in further physical decline, depression, social isolation, and feelings of helplessness. What can you do to prevent falls in the home?12 • Remove things that can cause falls from hallways, stairs, and frequently walked areas. • Install handrails inside and next to the bathtub or shower and next to the toilet. • Improve lighting in the home. As we age, we need brighter lights to see well. Install lights on all staircases. • Remove small rugs or use a non-slip rug pad to keep rugs from slipping. • Keep frequently used items in cabinets that can be easily reached without using a step stool. • Install ramps to eliminate falls on exterior stairs.13 • Ask your doctor to recommend an occupational therapist in your area to help you complete a home safety assessment. For more information, review the Rebuilding Together’s Safe at Home Checklist www.rebuildingtogether.org/resource/age-in-place-checklist Rebuilding Together provides home modification services to low-income homeowners throughout the United States14 New Orleans, 504-581-7032 7 Dementia Care: Decision Tree and Guide 2014 How to Find Community-Based Care 1) Elder Care Government: 4) A First Name Basis: www.eldercarelocator.gov www.afirstnamebasis.com • Offers information to help families • Non-medical caregiving find quality care. company in Louisiana • Explains home health care options • Call: 877-557-5525 and payment options. 5) Dependable Care: 2) Home Instead: www.homeinstead.com www.dependablecare.net • Provides non-medical caregivers in • Provides non-medical care in the New Orleans and Jefferson Parish New Orleans Area and St. • Can provide caregivers trained in Tammany parish dementia care. • 702 N Carrollton Ave, New • Call: 504-455-4911 Orleans, LA 3) Visiting Angels: Call: 504-486-5044 • Provides in-home, elder, respite, 6) Egan Healthcare Services: senior personal, and companion care www.eganhealthcare.com services. • Provides skilled nursing services • 1929 Hickory Ave., New Orleans, in the home throughout New 70123 Orleans and surrounding areas. • Call: 504-737-0522 • Call: 504-835-4474 8 Dementia Care: Decision Tree and Guide 2014 Medicare and Medicaid Medicare Part A: Hospital insurance15 Medicaid: Typically pays for: • This is the only public program that covers long- • Hospital care term nursing home care for people who meet the • 100 days of skilled nursing facility requirements of a low income and minimal care or nursing home care assets. • End-of-life hospice care • Most people living in nursing homes • Limited home health services who qualify for Medicaid are required to spend Medicare Part B: Medical insurance their Social Security income and any other monthly income, except for a minimal personal Typically pays for: needs allowance, to pay for nursing home • Medically necessary services care. Please consult with an attorney or • Supplies financial advisor for more information. Preventative services • • Medicaid will make up the difference if the resident cannot pay the full amount or if the 14 Medicare Qualifications:17 resident has a financially dependent spouse. • Medicare is for people age 65 and • Because of the high costs of long term care older as well as those who have a services, people with dementia often deplete their income and assets and will eventually special condition or disability. 16 • Medicare Hospital Insurance (Part qualify for Medicaid . A) and Medicare Supplementary 18 Medical Insurance (Part B) is Medicaid Qualifications: available to three basic groups: • In Louisiana, one must be a U.S. citizen, individuals who are aged, disabled, permanent resident of Louisiana, or a legal or those with end-stage renal alien. disease. • One must be in need of health care or insurance assistance and is low income or very low income. • One must also be either pregnant, blind, have a disability or a family member in your household with a disability, be responsible for children under 19 years of age, or be over 65 years old. • Those who are entitled to Medicare Part A and/or Part B are also eligible. Kindly visit https://www.surveymonkey.com/s/dementias to take our survey again after you have finished reviewing this document. Thank you for participating in our survey. 9 Dementia Decision: Caretaker Resource 2014 References: 1. Odenheimer, G., Shega, J., Johnson, J., Absher, J., Forciea, M. A., Gitlin, L., et al. (2013). Quality Improvement in Neurology: Dementia Management Quality Measures (Executive Summary). American Journal of Occupational Therapy, 67(6), 704-710. 2. Diagnosing Alzheimer's Alzheimer's Association. (n.d.). Diagnosing Alzheimer's Alzheimer's Association. Retrieved September 12, 2014, from http://www.alz.org/professionals_and_researchers_diagnosing_alzheimers.asp 3. Administration on Aging. (2012, April 13). Adult day care. In Elder Care Locator. Retrieved September 3, 2014, from http://longtermcare.gov/where-you-live-matters/living-in-a-facility/assisted-living/ 4. Giebel, CM., Sutcliffe, C., Stolt, M., Karlsson, S., Renom-Guiteras, A., Soto, M., Verbeek, H., Zabalegui, A., Challis, D. on behalf of the RightTimePlaceCare Consortium. (2014). Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study. Int Psychogeriatr, 26(8), 1283-1293. 5. Kaiser Commission on Medicaid and the Uninsured 2012. Medicaid and Long-Term Care Services and Supports No. 2168- 09. Washington, D.C.: Henry J. Kaiser Family Foundation. 6. Saison, J., Russell, D., & White, M. (2014, June). A guide to nursing homes. In HelpGuide.org. Retrieved September 3, 2014, from http://www.helpguide.org/elder/nursing_homes_skilled_nursing_facilities.htm 7. U.S. Department of Health & Human Services. (n.d.). Assisted living . In Find Your Path Forward. Retrieved September 3, 2014, from http://longtermcare.gov/where-you-live-matters/living-in-a-facility/assisted-living/ 8. Genworth Financial. (2014). Cost of care survey. In Genworth.com. Retrieved September 3, 2014, https://www.genworth.com/dam/Americas/US/PDFs/Consumer/corporate/130568_032514_CostofCare_FINAL_nonsec ure.pdf 9. Miranda-Castillo, C., Woods, B., Galboda, K., Oomman, S., Olojugba, C., & Orrell, M. (2010). Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes, 8(1), 132. 10. Caring for a Person with Alzheimer’s Disease. (2013). National Institute on Aging. Retrieved September 3, 2014, from http://www.nia.nih.gov/sites/default/files/caring_for_a_person_with_alzheimers_disease_2.pdf 11. Centers for Disease Control and Prevention. (2013). Preventing falls among older adults. Retrieved from http://www.cdc.gov/features/OlderAmericans/ 12. Falls and Older Adults. (n.d.). NIH Senior Health. Retrieved September 4, 2014, from http://nihseniorhealth.gov/falls/aboutfalls/01 13. Falls Prevention Fact Sheet. (2014, April 1). National Council on Aging. Retrieved April 9, 2014, from http://www.ncoa.org/assets/files/pdf/Fact-Sheet_Falls-Prevention.pdf 14. Rebuilding Together Aging-in-Place & Safe at Home Checklist. (n.d.). Rebuilding Together. Retrieved September 11, 2014, from http://rebuildingtogether.org/resource/age-in-place-checklist/ 15. What Medicare covers. (n.d.). Medicare.gov: the official U.S. government site for Medicare. Retrieved September 9, 2014, from http://medicare.gov/what-medicare-covers/index.html 16. Coehlo, D. P., Hooker, K., & Bowman, S. (2007). Institutional placement of persons with dementia: What predicts occurrence and timing. Journal of Family Nursing, 13, 253–277. doi:10.1177/1074840707300947 17. Original Medicare (Part A and B) Eligibility and Enrollment. (n.d.). Centers for Medicare & Medicaid Services. Retrieved September 15, 2014, from http://www.cms.gov/Medicare/Eligibility-and-Enrollment/OrigMedicarePartABEligEnrol/ 18. Louisiana Medicaid Program. (n.d.).Benefits.gov. Retrieved September 15, 2014, from http://www.benefits.gov/benefits/benefit-details/127 Resources for The Dementia Care Decision Tree (19-21) 19. Rist, P. M., Capistrant, B. D., Wu, Q., Marden, J. R., & Glymour, M. M. (2014). Dementia and dependence Do modifiable risk factors delay disability?.Neurology, 82(17), 1543-1550. 20. Rockwood, J. K., Richard, M., Garden, K., Hominick, K., Mitnitski, A., & Rockwood, K. (2014). Precipitating and Predisposing Events and Symptoms For Admission to Assisted Living or Nursing Home Care. Canadian Geriatrics Journal, 17(1), 16. 21. Luppa, M., Luck, T., Weyerer, S., Konig, H., Brahler, E., & Riedel-Heller, S. G. (2009). Prediction of institutionalization in the elderly. A systematic review. Age and Aging 2010, 39(1), 31-38. doi:10.1093/ageing/afp202 This information is only a guide: no one understands your medical condition like yourself and the healthcare professionals who care for you. If you have concerns about yourself or a loved one, we urge you to schedule an appointment with your personal doctor, or bring it up during your next visit. Your physician should be included in significant decisions that will impact the quality of life of your loved one with dementia. Specialist doctors that your primary care physician may refer you to include neurologists, 1 psychiatrists, psychologists, and optometrists.