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s e T Alzheimer’s News A collaborative effort of the Alzheimer’s Association Coalition of Texas and the Texas Council on Alzheimer’s Disease and Related Disorders Priorities and Outcomes from the 76th Texas Legislative Session

Community Alzheimer’s propriations Committee by data on patient health out- Resources and Education Representative Kyle Janek comes to state agencies and (CARE) Program (Houston) and was introduced researchers in Texas. The to the Senate Finance Commit- Council will establish a data The CARE program was tee by Senator Robert Duncan coordinating center to be developed in response to (Lubbock). located at Texas Tech Health legislation passed in 1997 Sciences Center. The bill was mandating the Texas Depart- Consortium of Alzheimer’s introduced in the House by ment of Human Services Disease Centers Representative Tony Goolsby (DHS) to develop an () and sponsored in the Alzheimer’s pilot program for HB 1504 directs the Senate by Senator Chris Harris the treatment of individuals Texas Council on Alzheimer’s (Arlington). diagnosed with Alzheimer’s Disease and Related Disorders disease. The program is oper- to establish a consortium of Improved Protection for ated in contiguous urban and Alzheimer’s disease centers to rural counties, and provides a People with Alzheimer’s include Baylor College of Disease Who Wander continuum of care and compre- Medicine, Texas Tech Univer- hensive care management. sity Health Sciences Center, In general, a 24-hour Current program sites include the University of Texas South- waiting period is required El Paso, Lubbock, Fort Worth western Medical Center and before an adult is considered a and Corpus Christi. the University of North Texas “missing person” and a search This year the legislature Health Science Center. The can be initiated. Now, pursu- appropriated approximately consortium will provide central- ant to HB 605 passed during $2.5 million for the biennium to ized, uniform services among the 76th legislative session, fund the four current CARE consortium participants, includ- local law enforcement agencies sites and to expand the pro- ing clinical services from each are required to begin investiga- gram to four new CARE sites consortium participant’s clinical tions of missing persons imme- in FY 2001. DHS shall also center. The consortium will diately if the subject is an adult encourage positive program also establish a database that reported to have chronic de- outcomes, identify and address will make data available to mentia, including Alzheimer’s gaps and services, and improve each participant; provide a dementia. Local law enforce- service delivery. The rider was resource index to facilitate introduced to the House Ap- research projects; and provide continued on page 2 continued from page 2 Adult Day Care ment are also required to enter The legislature appropri- the person’s name into the ated an additional $20.8 million Alzheimer’s Association Safe in state funds over the bien- Return program, a nationwide nium (with an additional fed- identification, support and eral match of approximately registration program that $33 million over the biennium) assists in the safe return of for rate increases in community individuals with Alzheimer’s or care programs under the De- a related dementia who wander partment of Human Services. or become lost. This bill was Programs to receive rate in- introduced in the House by creases were not specified. Representative Sherri Best Practices Greenberg (Austin) and spon- sored in the Senate by Senator Nursing Facility Adult Day Care Kenneth Armbrister (Victoria). Reimbursement Increase Adult Day Care centers Community Based The legislature appropri- provide a structured setting in Alternatives (CBA) Program ated appropriated $27.8 million which people with Alzheimer’s in state funds for rate in- disease and other disabilities The legislature appropri- creases during FY 2001. The can benefit from personal ated $27,500,000 in state FY 2001 year increases are counseling and other services funds for this community care contingent upon “adoption of and where they may enjoy program over the biennium. agency rules that incentivize activities such as exercise and With this money, and an addi- increased direct care staffing crafts. Adult day care pro- tional federal match, the aver- and direct care wages and grams are offered in commu- age number of CBA clients benefits in nursing homes. . .” nity centers, retirement homes, served per month in FY 2000 and assurances that “providers nursing facilities, hospitals and will be 23,900 and in FY 2001 will comply with the new staff- religious centers. Day care will be 26,575. By way of ing reimbursement rules...” benefits both the caregiver and comparison, in FY 1999 the ✪ the person with Alzheimer’s. average number of CBA clients served per month was 22,000. The structured activities provided in adult day care help $ The Coalition and the to reduce challenging behav- The Options Case iors often associated with Management Program Council wish to express our sincerest thanks to all the Alzheimer’s by keeping clients active and involved on a daily This program provides members of the Texas Legisla- case coordination and service basis. Disturbances in mood tureTHANK who played a role in may accompany the progres- arrangements for older adults who do not qualify for Medic- advancing these pieces of sion of dementia. By providing aid. The program received the legislation and who supported a variety of therapeutic ser- same funding that it received the efforts of the Coalition and vices, adult day care programs are effective in improving mood last session - $800,000 in the Council during the 76th general revenue per year. among cognitively impaired Texas YOULegislative Session. ! older adults.

2 Older adults suffering enables the caregiver to pro- vices on a sliding scale, where from dementia are at greater vide better care for a person caregivers pay according to risk for health problems. Pro- with Alzheimer’s at home for a ability or income. Medicaid fessionals at a day care center longer period of time. covers costs for people with can help evaluate a person very low income and few as- with Alzheimer’s and provide The cost of care starts sets. Medicare does not pay the caregiver with ideas for at approximately $25 dollars a for adult day care. enhancing care giving. The day. Some centers offer ser- supervision offered by trained In summary, adult day staff at adult day care can help care is an effective and finan- prevent and properly treat a cially viable treatment for number of health problems Alzheimer’s disease. By serv- commonly experienced by ing as a complement to people with Alzheimer’s dis- caregiving families, home- ease. based services, and primary care, adult day care programs Caregivers also benefit maintain the levels of function- from adult day care programs. ing necessary to prevent ex- Centers can provide the day- cess disability and help older to-day support to allow a adults remain in the place they caregiver to keep working or want to be most: home. get a break from caregiving. ✪ The job of caring for someone with Alzheimer’s often results in overwhelming and uncontrol- lable stress that can take a toll on the caregiver’s emotional well-being. In many cases, the Texas Alzheimer’s News (pending) is published quarterly by: caregiver is an older adult with Texas Department of Health health problems of his or her Office of Special Projects own. As a result of the stress, 1100 West 49th Street caregivers often experience Austin, Texas 78756-3199 Subscription price: No cost to subscribers increased health problems as Application to Mail at Periodicals Postage Rates is Pending at Austin,Texas. well as depression. In fact, it is POSTMASTER: Send address changes to : not unusual for the person with Texas Alzheimer’s News Texas Department of Health G408 Alzheimer’s to outlive the 1100 West 49th Street caregiver. Austin, Texas 78756-3199 For more information on Alzheimer’s disease and/or to be placed on the Adult day care is a form mailing list, call 1-800-242-3399. Information is also available via the Internet of respite care that can allevi- at http://www.tdh.state.tx.us/osp/alz.htm ate the stress associated with Letters should be addressed to Elaine Braslow, M.Ed., Editor, Texas Depart- ment of Health, 1100 W. 49th St., Austin, TX 78756. caring for a relative. It can free up the caregiver to run neces- Editorial Staff sary errands or go to a doctor’s Kay W. Hricik, JD, MPAff, Public Policy Director, Alzheimer’s Association, 512-454-5476 appointment. By allowing the Elaine Braslow, M.Ed., Director, Office of Special Projects, Texas Dept. of caregiver to take care of him- Health, 512-458-7534. self or herself, both emotionally and physically, adult day care Linda Jones, MSPH, Texas Dept. of Health, 512-458-7534. 3 A lzheimer’s Association Chapters in Texas

West Central Texas Chapter Greater Houston Chapter South Plains Chapter P.O. Box 3344 6161 Savoy, Suite 240 3601 4th Street Abilene, TX 79604-3344 Houston, TX 77036 Suite 3a116 915-672-2907 713-266-6400 Lubbock, TX 79430 806-799-4708

Greater Austin Chapter Greater West Texas Chapter P.O. Box 4829 P.O. Box 3389 Greater Wichita Falls Chapter Austin, TX 78765 Midland, TX 79702-3389 801 Burnet 512-454-5476 915-570-9191 Wichita Falls, TX 76301 940-767-8800 The Panhandle Area Chapter Greater Beaumont Area Chapter 2200 West 7th Street 780 S. Fourth Street Greater Chapter Amarillo, TX 79106 Beaumont, TX 77701 P.O. Box 630636 806-372-8693 409-833-1613 Nacogdoches, TX 75963-0636 409-569-1325 Tarrant County Chapter Coastal Bend Chapter P.O. Box 9709 4626 Weber Road, Suite E Greater Texarkana Area Chapter Fort Worth, TX 76147 Corpus Christi, TX 78411 P.O. Box 7812 817-336-4949 512-854-3887 Texarkana, TX 75505-7812 903-792-6122 South Central Texas Chapter Greater Dallas Chapter 8546 Broadway, Suite 110 2910 Swiss Avenue Rio Grande Valley Chapter San Antonio, TX 78217-6351 Dallas, TX 75204 1000 Camelot Drive 210-822-6449 214-827-0062 Suite 6005 Harlingen, TX 78550 Northeast Texas Chapter 956-440-0636 El Paso Chapter 3613 South Broadway, 4400 N. Mesa, Suite 9 Suite 401 El Paso, TX 79902 Tyler, TX 75701-8732 915-544-1799 903-509-8323

4 Research Update TEXAS TECH DNA BANK RESEARCHERS LINK A MILDER FORM OF ALZHEIMER’S DISEASE TO CHROMOSOME 3

At Texas Tech Univer- California researchers sug- sity Health Sciences Center gesting that 30% of elderly in Lubbock, Dr. Shirley Alzheimer’s patients may Poduslo and her research have plaques but no tangles staff are searching for the at autopsy. These research- cause of Alzheimer’s disease. ers concluded that the pa- Since the disease can exist in tients without the tangles several members of a family, also had Alzheimer’s, but a there is probably a genetic less severe form than if they basis for much of the disease. had both plaques and tangles. Finding the genes involved will enable the development The family enrolled in of tests to identify people at the DNA Bank fits into this risk of developing the disease category of Alzheimer’s before symptoms even start. disease in which plaques but Then it is hoped that methods not tangles are found in the of prevention can be applied. brain at autopsy. At Texas Alzheimer’s disease, including Tech the researchers were In order to find the progressively worse memory able to show that this form of genes involved in the devel- loss, enrolled into the DNA Alzheimer’s disease is linked opment of Alzheimer’s dis- Bank. The patient had 3 with markers on chromosome ease, the DNA Bank - a siblings who were similarly 3. The researchers are now collection of DNA samples affected. The mother also looking for the gene in chro- from Alzheimer’s patients had several siblings with mosome 3 that may be mu- and their family members who severe memory problems. tated in this milder form of live around Texas, was estab- The patient lived with the the disease. Identifying lished at Texas Tech. The disease for 13 years. After markers and genes linked DNA Bank includes samples death, an autopsy was per- with the disease will assist in from the patient and his or formed. The characteristic clinically subclassifying pa- her spouse, the patient’s signs of Alzheimer’s in a brain tients according to their siblings and children and their at autopsy are the loss of presenting symptoms and in respective spouses, and even neurons and presence of identifying potential re- the grandchildren. The more plaques and tangles. The sponses to new drugs coming people who enroll in the DNA patient’s brain in this study on the market. This exciting Bank, the better the chances had plaques only. There were research is made possible not are of finding the cause of the no tangles. The researchers only by the dedicated efforts disease. were puzzled. They thought of Dr. Poduslo and her staff, that maybe this patient had a but also by the patients and Here’s an example of dementia other than their families who have en- how it works. A patient with Alzheimer’s disease. There rolled in the DNA Bank. the clinical signs of was a report by a group of Thanks to all! ✪ 5 Alzheimer’s Disease in the New Millennium: Developing a Community

of Care

If you are a physician, legislator, ombudsman, healthcare facility administrator, activity director, nurse, case manager, home health aide, or family caregiver, SAVE THESE DATES! ➲ ➲ April 27 and 28, 2000 Red Lion Hotel, Austin The Texas Council on Alzheimer’s Disease and Related Disorders and the Texas Department of Health present a comprehensive, cutting edge conference!

Topics: Speakers:

☛ advances in treatment and care Marcelle Morrison-Bogorad, Ph.D., National Institute ☛ latest in genetic research on Aging ☛ legal, financial, ethical, environmental, Rachelle Doody, M.D., Ph.D., Baylor College of behavioral, and cultural diversity issues Medicine ☛ special training for healthcare facility Shirley Poduslo, Ph.D., Texas Tech University Health staff Sciences Center ☛ validation therapy workshop Myron Weiner, M.D., UT Southwestern Medical Center ☛ care options, quality indicators, and Naomi Feil, M.S.W., Validation Training Institute community resources Liz Carpenter, Author and Former Press Secretary to Lady Bird Johnson And numerous other experts in the treatment and care of individuals with Alzheimer’s disease Continuing education units for multiple disciplines will be available. Call 1-800-242-3399 in February to receive a conference brochure including complete program, session descriptions, and registration information. For now, save these dates: April 27 and 28, 2000!

6 goes on! I have 3 daughters - minding myself of the good all very busy. One lives in Ft. 50 years out of the 57 we Caregiver Worth and has 3 teenage had in our marriage. I still sons, plus teaches preschool; leave Gracy Woods many a one lives in Houston and is day with tears in my eyes - Profile the general manager of her hating to leave the hand that husband’s office; and the is holding mine so tightly. I Coping With a Loss oldest lives in Austin. She is remember a loving family, a nurse supervisor, married, civic work that we did, and by Frances Plotsky and busy. They all come at happy times. That helps. And it is a loss! The first call if I need them, but I Yes, I am lonely. I person you’ve been intimate don’t see them as often as I’d miss him terribly, but I feel with, have children with, have like. lucky. I loved and was loved So, my advice to those in return. loved for many years is not ✪ the same person you of you in the same position I married. am in - stay active, When I keep in touch with first at- your friends, keep Caregiver Tip tended the active in your Shoal Creek various activi- When people offer to Hospital ties - bridge, Support mah jongg, help, don’t be shy Group, I really exercise, what- about accepting the didn’t like ever. When Mort what I was first went into a offer and suggesting hearing. I did home 5 years specific things they not want to ago, I had learn how much company for can do. patients deterio- dinner every rated. Then one two weeks. I day a lady came love to cook and it from Taylor was therapeutic to Caregiver Resources bemoaning her life taking see my friends. I Alzheimer’s Association care of her husband with can’t do it as often now 1-800-272-3900 Alzheimer’s disease. She because of a hip that just http://www.alz.org was almost in tears telling us won’t cooperate. I belong to our Sisterhood at my temple that all her friends had de- Alzheimer’s Disease Program serted her, never visiting, and go to religious services Texas Department of Health never inviting them out, and as frequently as possible. I 1-800-242-3399 never calling. I suddenly promised myself 5 years ago http://www.tdh.state.tx.us/ realized how lucky I was - my to take care of my health. I osp/alz.htm friends have been wonderful. have one good meal each day, “I’ve made a pot roast for mostly what I cook. National Family Caregiver Association dinner tonight and I know that It is a drag this disease 1-800-896-3650 it’s one of your favorites.” - going on and on. Like http://www.nfcacares.org “We’re going to Luby’s for Nancy Reagan said, “It’s a supper, come join us.” And it long goodbye.” I keep re- ✪ 7 Texas Department of Health Office of Special Projects Periodicals 1100 W. 49th Street

Austin, TX 78756

lated disorders. lated

affected by Alzheimer’s disease and re- and disease Alzheimer’s by affected and professional caregivers, and the public. the and caregivers, professional and

for the improved quality of life for Texans for life of quality improved the for medical and academic communities, family communities, academic and medical

The mission of the Coalition is to advocate to is Coalition the of mission The persons with Alzheimer’s disease to the to disease Alzheimer’s with persons

ing, and multicultural outreach programs. outreach multicultural and ing, services and related activities available for available activities related and services

semination of information, in-service train- in-service information, of semination as well as, to disseminate information on information disseminate to as, well as

Safe Return program for wanderers, dis- wanderers, for program Return Safe statewide research and education efforts, education and research statewide

educational programs, a lending library, the library, lending a programs, educational and the Speaker of the House to coordinate to House the of Speaker the and

phone help line, family support groups, support family line, help phone by the Governor, the Lieutenant Governor, Lieutenant the Governor, the by

1980 to provide services including a tele- a including services provide to 1980 who care for them. Members are appointed are Members them. for care who

national health organization founded in founded organization health national sons with Alzheimer’s disease and those and disease Alzheimer’s with sons

Alzheimer’s Association - a voluntary a - Association Alzheimer’s to serve as the state’s advocate for per- for advocate state’s the as serve to

is a coalition of the 17 chapters of the of chapters 17 the of coalition a is was created by legislative mandate in 1988 in mandate legislative by created was

Coalition of Texas(AACT) of Coalition Disease and Related Disorders Related and Disease

The Alzheimer’s Association Alzheimer’s The The Texas Coucil on Alzheimer’s on Coucil Texas The