Assessing Elder Needs How to Measure Benefits and Develop Links to Long-term Care Alan Allery, Ph.D. Richard L. Ludtke, PhD Leander R. McDonald, PhD National Resource Center on Native American Aging at the UNDSMHS Center for Rural Health Supported by the AoA Started in 1993 Technical Assistance Training Research
Current Projects Elder Needs Assessments NASIE Project Elder Care Locator Professional Journal Title VI Training Title VI Resource Development Purpose of the Elder Needs Assessment Project The purpose of this project was to assist tribes in collecting data they could use to build infrastructure in their communities. Multiple methods are used throughout the study, but the main method of data collection is the survey instrument (administered face-to-face with elders).
Population Native American elders residing primarily on reservations Individuals age 55 and over living on or around Indian areas. Age 55 is considered comparable to 65 and over in the general population Sampling Design Get everyone in small populations Sample in large populations Systematic or simple random sampling
Data is collected on General health status Activities of Daily Living (ADL s) Instrumental Activities of Daily Living (IADL s) Indicators of chronic disease Indicators of vision and hearing Tobacco and alcohol use Mental Health Diet and exercise & Weight and weight control MIEME Social supports National Resource Center Provides: Survey instruments a standardized tool Assistance with sampling Training on data collection Technical support Data entry Data analysis Statistical profiles of your elders Comparisons with national norms
Local Communities Provide: Obtaining a resolution from their tribal councils Locating a list and selecting names for the sample Data collection Receiving the findings and getting them to the right people Local implementation and coordination Current Status of Cycles I & II Cycle I 171 tribes from 89 different sites are represented in national file 9,403 Native elder participants have filled out the survey At least one tribe from 11 of the 12 I.H.S. Regional Areas is represented in the national file 241 tribes from 69 sites representing 9,941 Native elders have completed 41 of these sites are previous participants An additional 106 tribes from 36 sites have received the surveys and are interviewing their elders All 12 I.H.S. Regional Areas are represented in the national file
Cycle I Chronic Disease Patterns Compared with National Data Chronic Diseases Arthritis (N=9,403) Arthritis 5 45% 4 35% 47% 4 Native elders were 18% more likely to experience arthritis than the U.S. general population. Native Elders National Data
Chronic Diseases Congestive Heart Failure (N=9,403) Congestive Heart Failure 16% 11% 6% 1% 12% 8% Native elders were 46% more likely to experience congestive heart failure than the general U.S. population. Native Elders National Data Chronic Diseases Stroke (N=9,403) Stroke 1 9% 8% 7% 9% 8% Native elders were 15% more likely to experience a stroke than the general population. Native Elders National Data
Chronic Diseases Asthma (N=9,403) Asthma 1 8% 7% 6% 7% Native elders were 43% more likely to experience asthma than the U.S. general population. 5% Native Elders National Data Chronic Diseases Cataracts (N=9,403) Cataracts 3 25% 2 15% 1 5% 21% 28% Native elders were 27% less likely to experience cataracts than the general population. Native Elders National Data
Chronic Diseases Breast Cancer (N=5,525) Breast Cancer 5% 4% 3% 2% 1% 4% 3% Native elder women were 3 more likely to experience breast cancer than the U.S. general population. Native Elder Women National Data Chronic Diseases Prostate Cancer (N=3,595) 5% 4% 3% 2% 1% Prostate Cancer 7% 2% Native elder men were 245% more likely to experience prostate cancer than the U.S. general population. Native Elder Men National Data
Chronic Diseases Colon/Rectal Cancer (N=9,403) 3% 2% 1% colon/rectal cancer 2% 3% Native elders were 5 less likely to experience colon/rectal cancer than the U.S. general population. Native Elders National Data Chronic Diseases High Blood Pressure (N=9,403) High Blood Pressure 5 44% 43% 43% 42% 41% 4 Native Elders National Data Native elders were 17% more likely to experience high blood pressure than the U.S. general population.
Chronic Diseases Diabetes (N=9,403) Diabetes 4 35% 3 25% 2 15% 1 5% 38% 14% Native elders were 169% more likely to experience diabetes than the U.S. general population. Native Elders National Data Patterns of Change Observed Between Cycle I and
General Health Status 4 35% 3 25% 2 15% 1 5% 4% 4% 14%14% 39% 34% 34% 32% 14% 1 Excellent Very Good Good Fair Poor Cycle I Specific Chronic Diseases 6 5 4 3 2 1 24% 2 1 12% 5 52% Asthma Cataracts High Blood Pressure Cycle I
Vision 10 8 86% 87% 6 4 23% 3 2 11% 9% Blindness in one or both eyes Eyeglasses Trouble Seeing (Even w/glasses) Cycle I Last visit to eye doctor? 5 4 3 2 29% 33% 31% 25% 39% 41% 1 1% 2% Never less than 6 months 6-12 months over 1 year Cycle I
Hearing 2 15% 17% 17% 13% 14% 18% 18% 1 5% Deafness in one or both ears Cycle I Hearing Aid? Trouble hearing even w/hearing aid Last hearing test? 6 5 4 3 2 1 19% 22% 8% 1 16% 11% Never less than 6 months 6-12 months 57% 57% over 1 year Cycle I
Dental Services Needed 4 37% 3 24% 3 32% 2 18% 22% 15% 1 1 1 4% 5% 4% 3% 3% Denture work Teeth filled/replaced Teeth pul led Work to improve appearance Gum Treatment Relief of Pain None Cycle I Last dental visit? 6 5 53% 55% 4 3 2 1 4% 3% 22% 26% 21% 17% Never less than 6 months 6-12 months over 1 year Cycle I
Use of Services Nutritional Services Transportation Physician Social Services Skilled Nursing Personal Care PT Respite OT/VT Speech/Audiology 0 0.1 0.2 0.3 Cycle I Behavioral Risk Factors Cycles I & II
Tobacco Usage 35% 3 25% 2 15% 1 5% 34% 26% 23% 4% 4%4% 5% Cigarettes Chewing Tobacco Ceremonial Cycle I National Data Cigarettes Smoked a Day 35% 3 25% 2 15% 1 5% 29% 28% 29% 35% 1-5 cigs/day 6-10 cigs/day 27% 28% 11-20 cigs/day 9% 6% 7% 21-30 cigs/day 4% 31 or more Cycle I
Chewing Tobacco 6 55% 5 4 3 2 44% 18% 19% 27% 37% 1 1 can or less 2 containers 3 or more ND Native Elders National Data How long since last drink of alcoholic beverage? 5 45% 42% 4 3 2 1 19% 19% Within past 30 days 8% 9% 6% 6% More than 30 More than a yearmore than 3 years days but with past but with past 3 ago year years Cycle I 22% 24% Never
Binge Drinking (5 or more drinks on one occasion) 10 8 83% 85%93% 6 4 2 1 8% 4% 4% 3% 2% 3% 4% 2% None 1 or 2 days 3 to 5 days 6 or more Cycle I National Data Exercise 5 4 3 2 1 43% 27% 28% 42% 24% 18% 7% 5% 1% 3% 2% 1% 0 activities 1 activity 2 activities 3 activities 4 activities 5 or more Cycle I
Body Mass Index 45% 4 35% 3 25% 2 15% 1 5% 24% 24% 36% 33% 4 43% Low/Normal Overweight Obese Cycle I New Items in
Chronic Diseases Osteoporosis & Depression 2 15% 1 5% 18% Osteoporosis 14% Depression Native elders reported significant rates for both Osteoporosis and Depression. Among the chronic diseases, these rank in the top six. Levels of Diabetes Among Native Elders 6 53% 5 4 3 28% 2 1 7% 6% 4% None Exercise & Diet Oral Meds Oral + Insulin Insulin
Cancer Screening Tests 6 5 4 3 2 1 54% 33% 23% 37% 11% 53% 7% 49% 44% 39% 35% 25% Blood Stool Mammogram Pap Smear PSA Never Within year Over 1 year Health care coverage 10 83% 8 6 4 17% 2 Yes No
Type of healthcare coverage 6 5 4 3 2 1 59% 53% 21% 17% I.H.S. Medicare Medicaid Private Ins. 9% 6% 5% Tribal Other VA Personal doctor or care provider? 5 5 4 32% 3 2 19% 1 Yes, only one More than one No
Where do you go for healthcare? 7 64% 6 5 4 3 26% 2 1 4% 3% 2% 1% 1% PHS/I.H.S. doctor's office Outpatient no usual place ER Urgent Care Other Main reasons for not getting medical care Cost No Transportation Wait in waiting room 25. 22.6% 20.3% Wait for appt. 18.2% Distance Office not open Language Disability Access 2.8% 2.2% 9.1% 18.2% 0. 5. 10. 15. 20. 25.
Nutritional Risk Scores 5 46% 4 32% 3 24% 2 1 Good Moderate Risk High Risk Willingness to Use Services: Meals on Wheels Transportation Home Health PT Skilled Nursing Nutritional Services Social Services Physician Personal Care Respite OT/VT Adult Day Care Speech/Audiology 1 2 3 4 5 6 7
Functional Limitations Functional Limitations The majority of definitions concerning functional limitations or disability refer to activities of daily living (ADL s) and instrumental activities of daily living (IADL s) as indicators of functionality.
Activities of Daily Living (ADL s) Eating Walking Using the toilet Dressing Bathing Getting in/out of bed Instrumental Activities of Daily Living (IADL s) Cooking Shopping Managing money Using a telephone Light housework Heavy housework Getting outside
Functional Limitation Categories Categories Limitations Recommended Services Little or none No ADL limitations, up to one IADL limitation Moderate One ADL limitation with fewer than 2 IADLs No Services Required Home and Community Based Services Moderately 2 ADL limitations Assisted Living Severe Severe 3 or more ADL limitations Skilled Nursing Facility Rates of Functional Limitation 7 6 5 4 3 2 1 59% 65% 21% 18% little/none moderate moderately severe 7% 6% 13% 12% severe Cycle I
Demographics Gender 7 6 5 4 3 2 1 39% 38% Male 61% Female 62% Cycle I
Age 45% 4 35% 3 25% 2 15% 1 5% 4 38% 37% 38% 17% 19% 5% 6% 55-64 65-74 75-84 85+ Cycle I Marital Status 5 4 3 2 1 42% 44% 31% 29% 2 18% 7% 8% Now married Widowed Divorced or separated Never married Cycle I
Personal Annual Income 35% 3 25% 2 15% 1 5% 26% 19% 17% 12% 33% 31% 9% 1 6% 9% 9% 14% 2% 4% <$5,000 $5-6,999 $7-14,999 $15-19,999 $20-24,999 $25-49,999 $50+ Cycle I Education Level 6 5 4 3 2 1 3% 2% None or kindergarten 52% 54% 23%22% 22% 21% 1%1% Elementary H.S. College Refused Cycle I
Native American Map for Elder Services (NAMES) Grant Background NRCNAA received grant in September, 2002 Funded by Office of Rural Health Policy, Health Resources and Services Administration in Rockville, MD Result of testimony given by NRCNAA to Senate Committee on Indian Affairs in July 2002.
Purpose of the Project To assist tribes in interpreting and using their needs assessment data to develop long-term care infrastructure that respond to local needs and culture. Planned Deliverables Develop a spectrum of long term care services/options for tribes to consider when planning, developing, and implementing their long term care efforts. Develop a web based and paper tool kit.
The Toolkit will: Be specifically geared towards American Indian and Alaska Native elderly. Topics covered in the toolkit are community development, needs assessment, health promotion, home and community based services, assisted living, skilled nursing homes, and hospice care. Focus Group Meeting Held in November 2002 in Denver, CO Invited participants for the focus group represented a wide range of geographic areas and expertise. Participants work with American Indian elderly through tribal elder programs, state elder programs, tribal elder care homes, or nursing homes near the reservation.
Focus Group Meeting (Cont.) 12 participants 2 ½ day meeting 1 day for agency information 1 day for open discussion on LTC ½ day for prioritizing Focus Group Results Priority list: Define the continuum of long term care service options How to conduct a needs assessment How to develop community interest and support Provide examples of programs Discuss the differing land and jurisdiction issues
Focus Group Results (Cont.) What should be the initial focus of the toolkit? 1. Prevention 2. Community based 3. In-home services Deliverable #1: Spectrum of long term care services/options
Functional Limitation Levels Applied to Services and Personnel Level Functional Limitation Service Goals Services with best fit Personnel required Little or none (65%) Health promotion, preventive care, maintaining vitality No caregiver services required Health Promotion/Prevention Health educators, physical trainers, therapists Moderate (18%) This category represents entry level functional limitations and requires assistance usually consistent with remaining in one s home. Supportive services to aid persons in remaining in own domicile. Train and support informal providers and buffer them with respite and contact services for a range of possible tasks. Informal care w/supports Chronic Disease Management Home & community based Day/night care* Durable medical* equipment Home health care* Homemaker services* Physical therapy Occupational therapy Medication assistance* Speech therapy Mental health services Transportation services* Nutritional services* Personal care* Respite care* * Require local providers Family and friends Trainer for skills Facility staff LPN/CNA Rental source RN, LPN, CNA, PT, OT Cleaning and chore assts. PT, PT aides, tele-health OT, OT aids, tele-health Medication aide Speech therapist Psychologist, Psychiatrist, Psych. Social Worker, Van driver Dietician, aide Trained attendants Trained respite providers or institutional site Functional Limitation Levels Applied to Services and Personnel Cont Level Functional Limitation Service Goals Services with best fit Personnel required Moderately Severe (6%) The goal for this level of care is to provide housekeeping and meals along with a modest level of oversight. People may contact for services from the home and community based services in addition to the basic services found in these settings. Assisted living establishes the goal for this cluster in that it seeks to maintain resident control over services. Congregate care Basic care facilities Assisted Living Institutional staff as required by state regulations Severe (12%) With 3 or more ADLs, this level tends to become prime candidates for skilled nursing care. They represent care needs with relatively high levels of acuity. Skilled nursing care is the most fully institutional and is reserved for those with medical needs necessitating this level of care. Skilled Nursing Care Institutional staff as required by state regulations Terminal as special category End of life care occurs at all points on the above continuum, but is concentrated at the higher levels of limitation. The goal is physical and emotional comfort. Hospice Care *Hospice volunteers and coordinator
Deliverable #2: Web based and paper tool kit Development of Product Resource Book and Website 1. Introduction 2. Community Development 3. Needs Assessment 4. Health Promotion & Preventive Care 5. Home & Community Based Services 6. Assisted Living 7. Skilled Nursing Home 8. Hospice Care 9. Differing Land and Jurisdiction Issues 10. Definitions
Decision Tree Does your tribe have community interest and support in the development of LTC services? Yes No, go to Community Development Not Sure, go to Community Development Has your tribe conducted a Needs assessment on elder health? No, go to Needs Assessment Yes What category did the majority of your elders fall under? Little or none (go to Health Promotion) Moderate (go to Home & Community Based) Moderately Severe (go to Assisted Living) Severe (go to Skilled Nursing Home) Availability of Products Website can be accessed through the UND Center for Rural Health website: http://www.medicine.nodak.edu/crh/names/ The resource book will be sent to the 100+ tribes that have conducted the NRCNAA needs assessment
Alan Allery alan.allery@und.nodak.edu Richard L. Ludtke richard_ludtke@medicine.nodak.edu Leander R. McDonald rmcdonal@medicine.nodak.edu National Resource Center on Native American Aging Tel: 1-800-896-7628 Fax: 701-777-6779 Website: http://medicine.nodak.edu/crh