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Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical Director Amazing Place Memory Care and Wellness Center

Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

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Page 1: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Dementia Caregiving Across the Continuum: What Clinicians and

Practitioners Need to Know Mary M. Kenan, Psy.D.

Clinical DirectorAmazing Place Memory Care

and Wellness Center

Page 2: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Overview

• What is Alzheimer’s Disease (AD)

• Prevalence and Incidence

• Detection and Diagnosis

• Impact of Cognitive Impairment

• Needs, Requirements, and Challenges

• Adult day services

Page 3: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

What is Alzheimer’s disease?

• Progressive neurological illness impairing memory, cognition, and eventually the ability to independently perform daily activities (function)

• Behavioral or psychiatric symptoms of dementia (BPSD) common

• Hallmarks: Amyloid plaques, neurofibrillary tangles, loss of connections between cells/cell death

• Variable presentation/rate of progression

• Onset begins decades before clinical symptoms detected1

• Leading cause of dementia

• Not a normal consequence of aging

1Braak H, Braak E. Frequency of stages of Alzheimer-related lesions in different age categories. Neurobiol Aging 1997; 18: 351-357.

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Prevalence & Incidence

• 5.4 million in America (35.6 million globally)1,2

• 454,000+ new cases each year

• 340,000 Texans3

• 200,000 younger than age 65 years

• Prevalence doubles every 10 years:– Age 65 ( up to 12%)

– Age 75 (up to 24%)

– Age 85 (up to 48%)

1 Alzheimer’s Association, 2010 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 6

2 Alzheimer’s Disease International (ADI): World Alzheimer Report 2010

3 Texas Alzheimer’s Research Consortium (TARC)

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What causes AD?

• In rare instances it is genetic

• 95-99% of all AD cases considered “sporadic”

• In most cases, AD results from a combination of genetic risk factors (not mutations), lifestyle practices, and environment

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Detection of AD

• History of meaningful decline from previous level of functioning • Individual may/may not complain of forgetfulness or “slipping”• Gradual onset and worsening of memory difficulties:

– Repeating information or questions– Difficulty retaining newly learned information (episodic memory)– Misplacing objects

• Problems estimating time frames or keeping up with appointments• Problems performing familiar tasks or adapting when schedule is altered • Executive dysfunction, impaired reasoning or faulty decision making resulting in

problems at work, around the home, or in social relationships1

• Spatial disorientation • Language problems• Behavioral and psychiatric symptoms of dementia (BPSD) occur in 60-93% of PwAD

during course of illness2

1Mayeux R. Early Alzheimer’s disease. N Engl J Med 2010;362:2194-22012Sink KM et al. Pharmacological treatment of neuropsychiatric symptoms of dementia: A review of the evidence. JAMA 2005;293(5):596-608

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Diagnostic Delay and Pre-diagnostic Challenges

• 22.4 months between symptomatic onset/pursuit of work up1

• Additional 10-11 mos. may pass between initial consult & diagnosis of AD2

• Misattribution of cognitive changes by intact spouse

• Lack of support for necessity of a work-up

• Uncertainty/disagreement re: who performs the work up

• Concern regarding disclosure of diagnosis to patient

1Wackerbarth SB, Johnson MMS. The carrot and the stick: Benefits and barriers in getting a diagnosis. Alz Dis Assoc Disord 2002;16(4):213-220.2Boise L. Morgan DL, Kay J, Camicioli R. Delays in the diagnosis of dementia: Perspectives of family caregivers. Am J AlzDisease 1999;20-26.

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Entry into Caregiving Role

• Four scenarios:– Status of caregiver defined by formal diagnosis– Symptoms recognized and diagnosis obtained– Symptoms recognized and care provided– Care provided prior to recognition or diagnosis

• Less abrupt entry associated with greater decrease in caregiver well-being and less likelihood of placement1

• Protracted period of recognition/reconciliation for caregivers of PwMCI2

1Gaugler JE, Zarit SH, Pearlin LI. The onset of dementia caregiving and its longitudinal implications. Psychology and Aging 2003;18(2)171-180.2Austrom MG, Lu Y. Long term caregiving: Helping families of persons with Mild Cognitive Impairment Cope. Curr Alzheimer Res 2009:6(4): 392-398.

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Mild Cognitive Impairment due to Alzheimer’s disease

• MCI due to AD proposed (vs. Amnestic MCI – Peterson Criteria)1

• Assumes primary underlying pathology is AD• Complaint regarding memory impairment (patient, informant, clinician)• Change represents a decline from previous level of functioning• Serial assessments ideal but may infer decline from history• Measurable impairment in one or more cognitive domains beyond what is

expected for age/educational level • Impaired episodic memory most common in those who progress to AD• Not due to presence of neurological/psychiatric/systemic illness or developmental

disability• Functional abilities preserved; commonly mild impairment with complex tasks• All who develop AD pass through this state• Spouse caregivers of those with MCI experience many of the same losses and

emotional responses as those caring for persons with advanced AD2

1Albert MS, DeKosky ST, Dickson D, Dubois B et al. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: Recommendations from the National Institute on Aging and Alzheimer’s Association workgroup. Alzheimers & Dementia 2001:1-10

2 Lu Y-FY, Haase J.E. Experience and perspectives of caregivers of spouse with Mild Cognitive Impairment. Curr Alzheimer Res 2009; 6(4):384-391.

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Impact on Care Partners of PwAMCI

• Depression common in PwAMCI1

• Depression common in care partners of PwMCI (24.6%)2

• Frustration, loneliness, social isolation (self-imposed), concern re: future3

• Uncertainty regarding diagnosis/prognosis• Diminishing awareness of deficits co-existing with areas of preservation• Gradual awareness of need to assume decision making (new learning)• Difficulty determining proper level of supervision required• Conflict with spouse and family members related to supervision efforts• Internal conflict regarding “therapeutic deception”• Diminished social relationships/finances/premature lifestyle changes4

1Lyketsos CG, Lopez O, Jones B, Fitzpatrick AL, Breitner J, DeKosky S. Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: results from the cardiovascular health study. JAMA 2002;288:1475-1483.2Lu, Y-FY, Austrom, MG, Perkins S, Bakas T, Farlow RM, He F, et al. Depression in informal caregivers of individuals with mild cognitive impairment. Am J Alzheimers Dis Other Demen 2007;22:273-285.3Austrom MG, Lu Y. Long term caregiving: Helping families of persons with Mild Cognitive Impairment cope. Curr Alzheimer Res 2009; 6(4):392-398.4Lu Y-FY, Haase JE. Experience and perspectives of caregivers of spouse with mild cognitive impairment. Curr Alzheimer Res 2009; 6(4):384-391.

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Impact of Cognitive Impairment on Martial Relationship

• Quality of relationship diminishes/”degrades”• Marital satisfaction negatively impacted by alterations in

communication, consensus, expressed affection, repetition as early as AMCI stage

• Lifestyle constraint and loss of self-time associated with anxiety1

• Level of intimacy erodes2

• Enjoyment of companionship and reciprocity diminish3

• Mutuality may mitigate caregiver role strain and subjective stress4

1Garand L, Dew MA, Urda B, Lingler JH, DeKosky ST, Reynolds CFIII. Marital quality in the context of Mild Cognitive Impairment. West J Nurs Res 2007;29(8):976-992.2Fearon M, Donaldson C, Burns A. Intimacy as a determinant of expressed emotion in caregivers of people with Alzheimer’s disease. Psych Med 1998;28(5):1085-1090.3Gallagher-Thompson D, Dal Canto PG, Jacob T, Thompson LW. A comparison of marital interaction patterns between couples in which the husband does or does not have Alzheimer’s disease. J of Gerontology: Social Sciences 2001;56B(3):S140-S150.4Archbold PG, Stewart BJ, Greenlick MR, Harvath T. Mutuality and preparedness as predictors of caregiver role strain. Res inNursing Health 1990;13:1375-384.

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Caregiving Post-Diagnosis of AD

• 75% report receiving no emotional support from family/friends• Poverty of informational/instrumental support provided at time of

diagnosis • Majority lacked knowledge of formal services • Majority had no plan for meeting future care needs of patient• Caregivers recognize and report lack of preparedness or perceived

competence to provide care• Gender and kinship influence response to caregiving role1

• Among first-degree relatives, knowledge base higher but accompanied by misconceptions about AD and research/treatment developments2

1Ducharme F, Levesque L, Lachance L, Kergoat MJ, Coulombe R. Challenges associated with transition to caregiver role followingdiagnostic disclosure of Alzheimer disease: A descriptive study. Int J Nurs Stud 2011;NS-1799:1-11.2Roberts JS, Connell CM. Illness representations among first-degree relatives of people with Alzheimer disease. Alz DisAssoc Dis 2000;14(3):129-136.

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Consequences of Unmet Informational Needs

• Contributes to patients’ and caregivers’ worry• May impede adjustment to illness/coping• Interferes with planning • Results in reliance on alternative sources of information• Impacts quality of care provided/obtained• Unsure what questions to ask to properly inform themselves or determine if

they’ve been given enough information• Clinicians and practitioners must initiate and guide conversations1

• Few psychoeducational interventions for caregivers of those w/mild-moderate dementia2

• “Tailoring” or “Dosing” of information is critical3,4

1Selman L, Higginson IJ, Agupio G et al. Meeting information needs of patients with incurable progressive disease and their families in SouthAfrica and Uganda: Multicentre qualitative study. BMJ 2009;338:B13262Ducharme FC, Levesque LL, Lachance LM et al. “Learning to Become a Family Caregiver” Efficacy of an intervention program for Caregiversfollowing a diagnosis of dementia in a relative. Gerontologist 2011 (advance access publication)3Zarit S, Femia E. A future for family care and dementia intervention research? Challenges and strategies. Aging Mental Health 2008;12:5-134Gwyther LP. Social issues of the Alzheimer’s patient and family. Am J Medicine 1998;104:17S-21S.

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What Families Want from Clinicians and Practitioners

• 8 “R”s:

– “RX” for active treatment

– Reliable expert primary medical skills

– Recognition of family efforts and loss

– Reassurance of continuity

– Relevant information re: their situation

– Retained family control

– Reminders (reassurance)

– Referrals to quality, reimbursable, or low-cost services

Gwyther LP. Care for families facing Alzheimer’s disease. Primary care practice implications from

research. In: Khatchaturian ZA, Radebaugh TX, eds. Alzheimers Disease: Causes, Diagnosis, Treatment,

and Care. Boca Raton, Fla; CRC Press 1996:323-331.

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Examining Caregiver Preparedness

• Acknowledge responsibility to self and others

• Facilitate self-examination

• Barriers to functioning in role of caregiver

• Expectations

• Identify strengths

• Assess knowledge base

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Variability of Response to Diagnosis and Progression

• Response to diagnosis is unpredictable

• Proactive/Information Seeking

• Validation/Relief

• Fear/Anxiety

• Pity

• Anger/Resentment

• Guilt

• Adaptation

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Empowerment in Caregiving

• “I should write a book”

• Enhanced ego-strength

• Awareness of positive qualities

• New role provides purpose

• Opportunity for reminiscence and relationship building

• Strengthening of spiritual beliefs

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Caregiving Questions Post-Diagnosis

• Stage of disease • How disease will progress/what are signs of progression• Genetic inheritance/testing• Prevention strategies (cognitive stimulation, diet, exercise,

neuroenhancements)• How other medications/medical conditions impact disease• How to preserve dignity, independence, “normalcy” for PwAD• When/how to disclose diagnosis• Safety Concerns/circumstances warranting intervention/how to intervene• How to manage BPSD (apathy, social withdrawal, depression, anxiety)• Resources available (readings, websites)

• Disagreements: need for second opinion and how/where to obtain, treatment options (e.g., use of holistic, off-label/unproven therapies), treatment efficacy, whether to participate in clinical trials, level of supervision required, legal and financial disputes

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Caregiving Challenges as Disease Progresses

• Whether and how to obtain formal caregiving or respite services• Adequacy of living circumstances and safety issues• Family members’ respective levels of participation in the caregiving

process– Inequality in provision of care/distribution of responsibilities– Taking advantage of the patient – Long-distance vs. primary caregiver

• Issues of management and advocacy • Need for ongoing evaluation• Persistence of therapy • End of life decisions: tube feeding/artificial hydration/withdrawal of life

support• Autopsy

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Non-pharmacological Interventions

• First line treatment for BPSD

• Environmental Engineering

• Caregiver Counseling and Assessment (ongoing):

– safety/supervision needs

– daily structure and socialization

– support/spiritual needs

– health and wellbeing

• Needs-based/Person-Centered Referrals: – Alzheimer’s Association

– Legal/Financial planners/Elder Mediators/Ombudsman

– Geriatric Care Managers

– Respite (e.g., adult day health center, home care/companion, ST placement options)

– LTC options/rehabilitation following hospitalization or injury/specialists/psychiatric care

– Social Services (AAA, APS, Sheltering Arms – day care, utility assistance)

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Benefits of Counseling for Caregivers of Persons with Dementia

American Academy of Neurology

Practice Parameter:• Educational programs should be offered to family caregivers to improve

caregiver satisfaction & delay time to NH placement (Guideline)

• Functional independence can be increased by graded assistance, skills practice, and positive reinforcement (Guideline)

• Behavioral Modification and the use of scheduled toileting and prompted voiding reduces urinary incontinence (Standard)

Doody RS et al. Neurology 2001;56:1154-1166.

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Benefits of Adult Day Services (ADS)

• Increased use of ADS associated with lower use of

home-based services1

• Use of ADS associated with reduction in nighttime

sleep-related problems; trend toward fewer depressive symptoms and agitation2

• Engagement as function of ADS may lessen restlessness and increase positive behaviors3

• Improvement in patient wellbeing (rated by caregivers)4

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Benefits of Adult Day Services (ADS)

• ADS use results in lower levels of caregiving-related stress and improved psychological wellbeing vs. controls5

• Kin relationship moderates caregiver response to ADS intervention6

• Enrollment in ADS (vs. informal/formal home-based services) more effective in reducing perceived burden: respite for caregivers and opportunities for social interaction for patients7

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Benefits of Adult Day Services (ADS)

• Direct counseling, education, care management, support plus ADS services results in enhanced wellbeing, greater ADS use and fewer NH placements8

• Non-pharmacological recommendations for mild/moderate dementia include caregiver education, supportive therapy for caregivers, referral to day treatment, exercise programs, respite9

• 54% of those refusing ADS score as having “possible depression” on Cornell Scale for Depression in Dementia and misconceptions about ADS10

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Take Home Messages

• Communication changes and BPSD may trigger burden for care partners in

pre-dementia stage

• Practitioners should be directive and refer accordingly

• Caregiving is a multidimensional experience

• Respite services (e.g., ADS) is available for all stages of dementia

Page 26: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

References for ADS Studies

1Skarupski KA, McCann JJ, Bienias JL et al. Use of home-based formal services by adult day care clients with Alzheimer’s disease. Home Health Care Services 2008;27(3):217-239

2Femia EE, Zarit Sh, Stephens MAP, Greene R. Impact of adult day services on behavioral and psychological symptoms of dementia. The Gerontologist 2007;47(6):775-788

3Woodhead EL, Zarit Sh, Braungart ER, Rovine MR, Femia EE. Behavioral and psychological symptoms of dementia: The effects of physical activity at adult day service centers. Am J Alz Dis Other Dementias 2005;20(3):171-179

4Wimo A, Wallin JO, Lundgren K et al. Impact of day care on dementia patients: Costs, well-being, and relatives’ views. Family Practice 1990;7(4):279-287

5Zarit, SH, Stephens MAP, Townsend A, Greene R. Stress reduction for family caregivers: Effects of adult day care use. J of 0: Social Sciences 1998;53B:S267-S277

6Kim K, Zarit Sh, Femia EE, Salva J. Kin relationship of caregivers and people with dementia: Stress and response to intervention. Int J Ger Psych 2011;25:1-8

7Sussman T, Regehr C. The influence of community-based services on the burden of spouses caring for their partners with dementia. J Health and Social Work 2009;34(1):29-39

8Gitlin LN, Reever K, Dennis MP, Hauck WW. Enhancing quality of life of families who use adult day services: Short and long-term effects of adult day services plus program. The Gerontologist 2006;46(5):630-639

9Alexopoulous GS, Jeste DV, Carpenter D, Ross R, Docherty JP. The expert consensus guideline series: Introduction: methods, commentary, and summary. J Psychiatric Practice 2007;13(3):207-216

10Durand M, James A, Ravishankar A, Bamrah JS, Purandare N. Domiciliary and day care services: Why do people with dementia refuse. J Aging Mental Health 2009;13(3):414-419.

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Amazing Place: Memory Care and Wellness Center3735 Drexel Drive

Houston, Texas 77027713-552-0420

www.amazingplacehouston.org

Page 28: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

The Amazing Place Mission

“To provide fellowship, memory care, and wellness for adults with Mild to Moderate memory loss and support to their families and the community”

Page 29: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

The Creative Arts Curriculum at Amazing Place incorporates the use of various artistic mediums

Page 30: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Recreational Therapy in the Courtyard at Amazing Place

Page 31: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Daily Clubroom Activities at Amazing Place

Page 32: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

The Cultural Arts Series at Amazing Place: Focus on the Opera

AP participants attended Opera in the Heights in February, 2011

Members of the Houston Grand Opera Studio perform annually at AP, a generous gift made possible by the Barrow family

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Intergenerational Programming at Amazing Place

The Rice School Choir performs for participants

St. John’s afterschool volunteers

Page 34: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Founded in 1996, thirteen sponsoring churches support the mission of Amazing Place

The Chapel at Amazing Place Amazing Place offers daily bible study and membership in choir for interested participants

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Wellness at Amazing Place

Dinah Brown, LVN – Program nurse at Amazing Place

Anne Helton, RN, BSN, MS, Health Services Consultant at AP with her University of Texas Community Health Nursing Student students at Amazing Place

Page 36: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Powerful Tools for Caregivers© Course (shown below) is held bi-annually at AP along with a weekly and monthly support group, monthly Q & A with AP’s

Clinical Director, and quarterly family educational forums.

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Sponsor Churches and 2011 Board of Directors

• Bellaire United Methodist• Bethany Christian• Chapelwood United Methodist• River Oaks Baptist• St. Anne Catholic• The Church of St. John the Divine• St. Luke’s United Methodist• St. Martin’s Episcopal• St. Michael Catholic• St. Paul’s United Methodist• St. Philip Presbyterian• St. Stephen’s Episcopal• South Main Baptist

• Debbie Sharp• Sandy Strauss• Judy MacPherson• Carol Postle• Carolyn Light• David Weaver – Secretary• Patsy Paine• Albert Angulo• Tom Callahan – Treasurer• Mary Eleanor Holloway• Susan Stasney• Kathy Munger – President• Laura Talbert• Kathy Johnson• Liz Rigney• Julie de la Torre• John Graml• Marcia Gerhardt• Beth Wiggins• Carla Burns• Karen Davis• Madeline Mauk• Michael Robson – Vice President• Greg Funderburk• John Unger – Vice President Operations• Executive Director – Tracey Brown

Page 38: Dementia Caregiving Across the Continuum: What Clinicians ... · Dementia Caregiving Across the Continuum: What Clinicians and Practitioners Need to Know Mary M. Kenan, Psy.D. Clinical

Amazing Place Advisory Board

• Margaret Bandy• Chuck Carlberg• F. B. (Tres) Cochran, III• Almeria Cottingham• Heidi Davis• Rachelle S. Doody, M.D., Ph.D.• Richard Elbein• Lisa Swalm Frantz• Cynthia Guill• The Rev. Laurens A. Hall• Vicki Keiser• Christopher L. Knapp• Carl Mueller• Dr. Tom Pace• Carol Ann Paddock• The Rev. Dean Robinson• Bill Roe• Roger Rolke• Carol Schreiber• Howard Smith• Thomas E. Smith• Don Woo