Health Care Utilization for Persons with Alzheimer’s Disease or … · 2019-11-19 · •Maggi...

11/19/2019

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Health Care Utilization for Persons with Alzheimer’s

Disease or Related Dementia &

Caregiving Research Caitlin Torrence

[email protected]

PhD Candidate, CU Applied Health Research & Evaluation

Research Associate II, CU Office of Research and Organizational Development

Selected Studies

• Healthcare Utilization and Cost for Persons with Alzheimer’s Disease or a Related Dementia

• Caregiver Competency

• Caregiver Empathy Study

• Establishing a Community Brain Health Program

• Department of Health and Human Services Caregiver Stress Survey

mailto:[email protected]

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Healthcare Utilization and Cost for Persons with Alzheimer’s Disease or a Related Dementia

• Explore the factors that lead to high healthcare utilization and costs for persons with ADRD.

• Seek to better understand if the disease is clinically costly or if the costs are the result of a healthcare system that is under-prepared to manage the symptoms of ADRD. • All-cause emergency department and inpatient utilization • Emergency department visits and readmissions for falls, pneumonia, and UTIs • Inpatient visits that result in the development of hospital acquired

preventable conditions

• SC uniquely suited to explore these questions


• Data sources • South Carolina Alzheimer’s Disease Registry

• South Carolina Patient Encounter Data

• Additional covariates at the zip code and hospital level

• Longitudinal dataset • 2008 – 2018

• Track ADRD patient utilization of healthcare services in SC over time and across health care settings

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Study sample:

• The population is all individuals who have sought care in a South Carolina ED or inpatient facility from 2008- 2018.

• Two cohorts will be created: • ADRD Cohort (Case): Individuals with ADRD who received an ADRD dx in 2014

and who also appear in the Patient Encounter Dataset.

• Non-ADRD Cohort (Control): Individuals in the Patient Encounter Dataset who are matched to cases & do not have a diagnosis of ADRD.

Healthcare Utilization and Cost for Persons with Alzheimer’s Disease or a Related Dementia Inclusion criteria:

• Cases in the AD Registry that meet the following criteria will be included in the sample:

• First diagnosis of ADRD between January 1, 2014 – December 31, 2014

• Age 65+ upon AD diagnosis (disease has a different etiology from early onset dementia) (sub-study 60 – 64 – later).

• Have at least 1 ED visit or Inpatient visit between 2008 – 2018 (Note: There are potentially persons on the AD Registry who have not had an ED or Inpatient visit during our timespan.)

• Dementia is identified as one of the following subtypes of ADRD: • Alzheimer’s disease (331.0) • Vascular dementia (290.4) • Frontotemporal Dementia • Dementia with Lewy Bodies (331.82) • Non-specific Dementias (290.0x-290.3x, 290.8x, 290.9x, 294.10, 294.11, 294.21, 797) • Mixed dementia (of the types listed above)

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• Control Selection (to be further developed): • Controls will be matched to cases using Propensity Score nearest neighbor.

• Age, sex, race, region of state, Charleston Comorbidity Index, Depression, Parkinson's, hyperthyroidism, hip/pelvic fracture, osteoporosis, anemia (not included in the comorbidity index), health insurance (note: we wish to exclude private insurance or managed care and billing and expenditures will differ greatly).

• Controls will be excluded if they have a diagnosis of MCI (331.83)

Basic Descriptive Data

• Random sample of ED data from 2013 • 71 individuals with a primary dx of ADRD

• Restricted to Age 50 + • 69 individuals with a primary dx of ADRD

• 173 individuals with a primary dx or a first secondary dx of ADRD

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Preliminary/Basic Descriptive Statistics: 50 years +

• Random sample ED visits for 2013 (50 years +) • 12% (69) individuals with a

primary dx of ADRD

• 18% (104) individuals with a secondary dx of ADRD

• 30% (173) of sample had a primary or 1st secondary dx of ADRD

83%

97%

13%

2% 4% 1%

0%

20%

40%

60%

80%

100%

Primary Dx Secondary Dx

Diagnosis Type by ADRD Type

Alzheimer's Vascular Other


• Median age by ADRD dx • Persons with an ADRD

primary or secondary dx have a higher median age.

• Age range for persons with ADRD smaller than for persons without an ADRD primary or secondary dx.

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• Race/ethnic of persons with a primary or secondary dx of ADRD.

71%

27%

2% 0%

10%

20%

30%

40%

50%

60%

70%

80%

White Black Other


• Average length of stay • 1.34 days (+-2.3) • Min: 1 day • Max: 29 days

• Average LOS range by ADRD type • Alzheimer's: 1 – 29

days • Vascular: 1 day • Other: 1 – 2 days

1.89

1

1.3

0

0.5

1

1.5

2

Alzheimer's Vasular Other

Average LOS by ADRD Type

Mean

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Caregiver Competency • Research Question

• How does competency for caregiving influence institutionalization?

• Hypothesis: • The higher the caregiver’s competency, the less likely the caregiver will be to

institutionalize.

Caregiver Competency • What data was used?

• Primary Data • Office for the Study of Aging at the University of South Carolina • Maggi Miller, Research Assistant Professor at the University of South Carolina • Candace Porter, PhD

• Original research purpose • Association Between Behavioral Disturbances and Nursing Home Admissions

in Patients with Alzheimer’s Disease Study* • Case-Control study (case= institutionalized; control=non-institutionalized) • Is NPI a good predictor of institutionalization risk

*Porter CN, Miller MC, Lane M, Cornman C, Sarsour K, Kahle-Wrobleski K. The influence of caregivers and behavioral and psychological symptoms on nursing home placement of persons with Alzheimer’s disease: A matched case–control study. SAGE Open Medicine. 2016;4:2050312116661877

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Caregiver Competency • Secondary data analysis

• Sample (n=352) • Isolated to Cases – Institutionalized

Caregiver Competency: Dependent Variable

• Caregiver’s main reason for institutionalization • Qualitative answers coded into five categories:

1. Challenging behaviors

2. “Just couldn’t do it anymore” (lack of social support)

3. “Dementia” (because they have the diagnosis)

4. Medical reasons/recommendation by the doctor

5. Better quality of care provided at the nursing home

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Caregiver Competency: Independent Variable

• Caregiver competency scale (validated, continuous measure) • Caregiver self-efficacy

• Confidence with caregiving

• Ability to manage difficult situations

• Feelings of success as a caregiver

Caregiver Competency: Covariates

• Caregiver gender

• Caregiver age

• Relationship to care receiver (spouse/non-spouse)

• Caregiver educational achievement

• Caregiver employment status

• Center for Epidemiologic Studies Depression Scale Revised

• Neuropsychiatric Inventory Scale (NPI-4)

• Zarit Burden Scale (4-item)

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Caregiver Competency: Descriptive

Statistics

Caregiver Competency: Multinomial

Logistic Regression

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Caregiver Competency: Discussion • As competency increases, caregivers are more likely to report that the main

reason for institutionalizing is due to lack of support.

• With lower competency, caregivers are more likely to institutionalize for medical reasons or behavioral challenges.

• While a more competent caregiver may be better able to assess when institutionalization is appropriate, many of the comments provided by respondents illuminated that the caregivers felt that they could keep their loved ones at home longer if they had received more help from family and friends.

• A poignant reason for institutionalizing a loved one due to lack of help was, “It was too much too handle. I am a single mom, and I have to work.”

Caregiver Competency: Limitations • Small sample size

• Secondary analysis (original research questions were slightly different)

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Caregiver Empathy Study: Team

• PI: Kapil Madathil, PhD

• Co-PI: Jeff Bertrand, PhD

• Aasish Chandrika Bhanu, PhD Candidate

• McKenzie Wilson

• Caitlin Torrence, PhD Candidate

• Students in Creative Inquiry Class

Caregiver Empathy Study • Building empathy among caregivers

• Dementia Simulation • Rice in shoes • Headphones with static noise • Gloves • Goggles to simulate macular degeneration • Dark room

• Powerful eye-opener for caregivers • Costly • Challenging

• Virtual reality?

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Caregiver Empathy Study: Design

• Pilot study

• Participants: Clemson University Students

• Randomized into three groups 1. Story

2. Physical

3. Virtual Reality

Caregiver Empathy Study: Measures

• Research question • Are the three groups equally able to increase empathy for persons with

Alzheimer’s disease

• Empathy operationalized by • Knowledge of Alzheimer’s disease assessment

• Attitudes about Alzheimer’s disease assessment

• Caregiving preparedness scale

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Caregiver Empathy Study: Knowledge Scale

• 30 items

• Specific questions about knowledge • People with AD are particularly prone to depression

• Most people with AD live in a nursing home

• Eventually a person with dementia will need 24-hour care

• People with Alzheimer’s disease do best with simple instructions given one step at a time.

Caregiver Empathy Study: Attitudes Scale

• 20 items

• Specific questions about attitudes regarding those with ADRD • It is rewarding to working with people who have ADRD

• I’m afraid of people with ADRD

• It is possible to enjoy interacting with people with ADRD

• People with ADRD can feel when others are kind to them

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Caregiver Empathy Study: Preparedness Scale

• 8 items

• Specific questions about how prepared one feels for caregiving • Physical needs

• Emotional needs

• Find services

• Handle emergencies

Caregiver Empathy Study: Measures • Measures

• Demographics • Race/ethnicity

• Educational attainment of parents

• Degree major

• Life satisfaction

• Tuition type

• NASA and Presence (VR simulation)

• Semi-structured interview questions

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Caregiver Empathy Study: Hypothesis • Caregiver knowledge

• Very little change among the three conditions.

• Caregiver preparedness • Story condition experience greater feelings of preparedness

compared to the Physical and VR conditions.

• Caregiver attitude • Expect slight improvement with story and slight decrease in the

Physical and VR conditions.

Caregiver Empathy

Study: Descriptive

Statistics

Group 1:

Story

Group 2:

Physical

Group 3:

VR

P-

value

n=14 n=14 n=13

Alzheimer’s disease knowledge scale

(pre-test)

14.6 (2.06) 14.6 (2.22) 14.9 (2.53)

Dementia attitudes scale (pre-test) 93.2 (8.03) 104.5

(12.2)

104 (10.8) *

Preparedness for caregiving (pre-test) 2.0 (.57) 2.8 (.80) 2.7 9.79) *

Female 12(86%) 11(79%) 10(77%)

White 9(64.2%) 12(85.8%) 12(92.3%)

Black 1 (7.1%)

Asian 5(35.8%) 1(7.7%)

Race: prefer not to report 1(7.1%)

P-value significant at the .05 level

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Caregiver Empathy

Study: Descriptive

Statistics

Group 1:

Story

Group 2:

Physical

Group 3:

VR

P-

value

n=14 n=14 n=13

Father’s Educational Attainment

Below high school 1(7.7%)

High school diploma/GED 2(14.3%) 2(14.3%)

Some college 1(7.1%) 2(14.3%) 1(7.7%)

Associates degree /technical college 1(7.1%) 3(21.4%)

Bachelor’s degree 3(21.5%) 2(14.3%) 5(38.5%)

Graduate/professional degree 7(50.0%) 5(35.7%) 5(38.5%)

Unknown 1(7.7%)

Caregiver Empathy

Study: Descriptive

Statistics

Group 1:

Story

Group 2:

Physical

Group 3:

VR

P-

value

n=14 n=14 n=13

Mother’s educational attainment

Below high school 1(7.7%)

High school diploma/GED 2(14.3%) 1(7.1%) 1(7.7%)

Some college 1(7.1%) 2(14.3%) 1(7.7%)

Associates degree/technical college 2(14.3%) 1(7.7%)

Bachelor’s degree 6(42.9%) 4(28.6%) 6(46.1%)

Graduate/professional degree 5(35.7%) 5(35.7%) 3(23.1%)

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Caregiver Empathy

Study: Descriptive

Statistics

Group 1:

Story

Group 2:

Physical

Group 3:

VR

P-

value

n=14 n=14 n=13

Degree major

Public health sciences 3(20%) 2(15.4%)

Nursing 7(50%) 7(46.6%) 4(30.7%)

Parks, rec. & tourism management 1(7.1%) 2(13.3%) 2(15.4%)

Psychology 1(7.1%) 1(6.7%)

Performing arts 1(6.7%)

Food science 1(6.7%)

Computer science 2(14.3%)

Caregiver Empathy

Study: Descriptive

Statistics

Group 1:

Story

Group 2:

Physical

Group 3:

VR

P-

value

n=14 n=14 n=13

Degree major

Statistics 1(7.1%)

Industrial engineering 1(7.7%)

Chemical engineering 1(7.7%)

Marketing 1(7.7%)

Education 1(7.7%)

Mechatronics 1(7.7%)

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Caregiver Empathy

Study: Descriptive

Statistics

Group 1:

Story

Group 2:

Physical

Group 3:

VR

P-

value

n=14 n=14 n=13

GPA 3.8(.23) 3.8(.22) 3.8(.23)

I am satisfied with my life. *

Strongly agree 1(7.2%) 8(57.2%) 10(76.9%)

Somewhat agree 10(71.4%) 5(35.7%) 3(23.1%)

Neither agree nor disagree 3(21.4%) 1(7.1%)

Tuition type *

In-state 4(28.6%) 10(66.7%) 11(84.6%)

Out-of-state 4(28.6%) 5(33.3%) 1(7.7%)

International 5(35.7%) 1(7.7%)

Other 1(7.1%)

P-value significant at the .05 level

Caregiver Empathy

Study: ANOVA

& Average Change

Intervention Group Knowledge

m (sd)

Attitudes

m (sd)

Preparedness

m (sd)

ANOVA test p-value .0144 .0001 .0127

Story 1 (2.7) -7.9 (5.6) -.4 (.57)

Physical Dementia Tour -1.4 (1.7) -.47 (6.3) -.11 (.48)

Virtual Reality Dementia Tour -.8 (1.8) 2.8 (5.0) .2 (.43)

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Caregiver Empathy

Study: ANOVA

with Planned

Contrasts

Intervention Group Knowledge

m (se)

Attitudes

m (se)

Preparedness

m (se) Story .39 (.33) 1.8 (.91)* .11 (.07)

Story vs physical & VR 2.1 (.7)** -9.1 (1.9)*** -.4 (.16)**

Physical vs VR -.5 (.8) -3.3 (2.2) -.3 (.18)

Significance at the following levels: *** 0.0, **0.01, *0.05

Caregiver Empathy

Study: Knowledge

Scale

• Significant difference between the story groups and the other groups.

• Persons in the physical and VR condition saw decrease in their knowledge. • After the simulations, questions that were scored

incorrectly were items like: • “Most people live in nursing homes.” • “When people with Alzheimer’s disease begin to have difficulty

taking care of themselves, caregivers should take over right away.”

Average Changes Knowledge

m (sd)

Attitudes

m (sd)

Preparedness

m (sd)


Story 1 (2.7) -7.9 (5.6) -.4 (.57)



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Caregiver Empathy

Study: Dementia Attitudes

Scale

• Significant differences between the story condition and the other conditions. • Attitudes about dementia decreased story condition.

• A slight, insignificant decrease for the physical dementia tour.


m (sd)

Attitudes

m (sd)

Preparedness

m (sd)


Story 1 (2.7) -7.9 (5.6) -.4 (.57)



Caregiver Empathy

Study: Preparedness

for Caregiving

• Significant decrease between story condition and the other conditions.

• People in the story and physical condition we see a decrease in mean scores • After the intervention participants felt less prepared to be a

caregiver

• VR condition scores increased indicating that participants felt more prepared after the intervention.


m (sd)

Attitudes

m (sd)

Preparedness

m (sd)


Story 1 (2.7) -7.9 (5.6) -.4 (.57)



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Caregiver Empathy Study: Discussion

• Empathy tour is not a stand-alone exercise • Potentially make people feel less confident and able to be a caregiver

• Important to pair with education programs, support groups, and other resources

• Holistic approach to supporting caregivers

• VR is a potentially cost-effective way to deliver the tour

Caregiver Empathy Study: Limitations

• Small sample

• Difficulty recruiting for the story condition • Sensitivity analysis

• Analysis of drop-outs

• Not the “right” population • Tried to recruit individuals in the nursing/health related fields

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Caregiver Empathy Study: Future Work

• Expanding our work to the Home and Community Based Waiver (Medicaid) Community Long-Term Living case managers. • Case manager work directly with both the participants and caregivers

• Case managers are the “link” between the participant/caregiver and services

• If case managers have this training, perhaps they will be more sympathetic to the caregiver role.

• Ideally, the case manager will administer caregiver stress assessments and referrals to respites, ADHC and other services offered by the Home and Community Based Waiver to support the caregiver.

• Building on the VR simulation to include Caregiver and Care Receiver roles • Selecting our sample from caregivers

Dementia Day Programs in the Upstate

• Starting in 2014 (10 semesters) the Institute for Engaged Aging (IEA) started offering best practice strategies to enhance cognitive functioning of those with early to mid-stage dementia.

• Over 100 students, 3 IEA faculty, 3 post-docs, and doctoral students

• Five sites • GHS

• Churches

• Retirement communities

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Dementia Day Programs in the Upstate

• Efforts resulted in the development of two respite and research sites • Golden Corner Respite Care at Church of Ascension in Seneca (Thursday

afternoons)

• IEA Brain Health Club (Monday and Wednesday afternoons)

IEA Brain Health Club: Creation

• Community collaborations to create the IEA Brain Health Club • PCMOW & IEA

• Received PIP grant to renovate abandoned center

• Received the Alzheimer’s Resource Coordination Center Grant

• Alzheimer’s Association • Provides respite vouchers for people to persons with dementia to attend the

programming

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IEA Brain Health Club: Programming & Research • Programming

• Lead by a director and Clemson University students

• Montessori styled approach to activities • Tailored to unique likes and needs

• Research site • Students and faculty conduct research studies

• Creative Inquiry Class delivering cognitively stimulating activities: https://spark.adobe.com/page/cEDa4p5JqPWiJ/

• Undergraduate student: Musical Memories

• Creative Inquiry Class delivering therapeutic exercise

DHHS Community Choices Caregiver Survey: Background • SC Department of Health and Human Services (DHHS) contracted with

Clemson’s Office of Research and Organizational Development (OROD) to develop a survey of caregivers of participants on the Community Choices and Home Again waivers (Medicaid).

• Waivers are for Medicaid eligible individuals who qualify for nursing home level of care but wish to live in the community.

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DHHS Community Choices Caregiver Survey: Background • OROD carries out the annual survey of waiver participants

• In 2018 participants were asked about the help that they are receiving post-transition • One-year post transition

• 73% of participants reported that family members were helping around the house

• 8 hours/day

• Two-years post transition • 4 hours/day

• Reporting that they need more help

DHHS Community Choices Caregiver Survey: Questionnaire Topics

• Demographics

• Type of care provided (clinical and non-clinical)

• Skills and abilities

• Values and preferences

• Self-efficacy for caregiving

• Social support

• Health and wellbeing

• Supportive services

• Desire to institutionalize

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DHHS Community Choices Caregiver Survey: Timeline

• Survey has been approved by DHHS

• Data collection to being in January

• Statewide sample of current caregivers of waiver participants

• Call center to collect data (staffed by Clemson students)

• Development of resource fliers and booklets for caregivers

• Recommendation of education/intervention programs

DHHS Community Choices Caregiver Survey: Goals

• Improve the current caregiver stress assessment used in the waiver assessment

• Understand the role of caregivers of participants on the Community Choices waiver

• Support the provision of services to caregivers (respite, education, etc.)

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Thank you &

Questions

Caitlin Torrence Office of Research & Organizational Development

Applied Health Research & Evaluation PhD Candidate [email protected]

864.387.9187

mailto:[email protected]

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