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 Utah Chapter Counseling the Alzheimer’s Caregiver: Impact on Self-Efficacy of the Caregiver and Utah Chapter Counseling the Alzheimer’s Caregiver: Impact on Self-Efficacy of the Caregiver and Disease Recipient Aging in America Conference San Francisco, April 28, 2011 Presented by Sylvia Brunisholz, Nick Zullo and Sonnie Yudell, Disease Supportive Services Program of Utah Alzheimer’s

 Utah Chapter We will talk about… Solutions-Focused Counseling Caregiver Impacts and Dilemmas A Utah Chapter We will talk about… Solutions-Focused Counseling Caregiver Impacts and Dilemmas A Plan for Life and Care Individualized Cognasium Plan Neuropsychiatric Inventory Questionnaire Self-Efficacy of the Client Dyad

 Solutions-Focused Counseling Looks at the positive side of problems and what works. Useful Solutions-Focused Counseling Looks at the positive side of problems and what works. Useful with both senior spousal and adult offspring caregivers R. K. & Gilliland, B. E. (2003). Theories and strategies in counseling and psychotherapy, 5 th ed. Boston, MA: Allyn & Bacon.

 Solutions-Focused Counseling Places emphasis on the future rather than the present or past. Solutions-Focused Counseling Places emphasis on the future rather than the present or past. Client’s are their own experts who can know what is best for them

 Solutions-Focused Counseling Therapy is collaborative Uses the resources available to the client Problems Solutions-Focused Counseling Therapy is collaborative Uses the resources available to the client Problems are reframed in a more positive way

 What problems do Alzheimer’s caregivers present with in counseling? Concerns about behavioral and What problems do Alzheimer’s caregivers present with in counseling? Concerns about behavioral and Neuropsychiatric Symptoms of the disease Their negative effects for both caregiver and disease recipient Aalten et al. (2005). The course of neuropsychiatric symptoms in dementia. International Journal of Geriatric Psychiatry, 20, 523 -530.

 What are the effects of these problems? Reduced quality of life for both What are the effects of these problems? Reduced quality of life for both caregiver and disease recipient More rapid decline trajectory Earlier institutionalization Burgener, S. C. & Twigg, P. (2002). Interventions for persons with irreversible dementia. Annual Review of Nursing Research, 20, 89 -124.

 What are common causes of behaviors in early stage (and resulting CG strain)? What are common causes of behaviors in early stage (and resulting CG strain)? Apathy and depression Other cognitive deficits and functional impairment follow (Higher level of CG burden and utilization of resources) Starkstein et al. (2009). Neuroimaging correlates of apathy and depression in Alzheimer’s disease. Journal of Neuripsyciatric Clinical Neuroscience, 21(3): 259 -265.

 Can these causes be treated (and thus reduce CG strain)? Studies indicate that Can these causes be treated (and thus reduce CG strain)? Studies indicate that pharmacological treatment did not influence the course of the neuropsychiatric symptoms in dementia (leaves few options for CG) Aalten et al. (2005). The course of neuropsychiatric symptoms in dementia. International Journal of Geriatric Psychiatry, 20, 523 -530.

 What are the perceptual impacts of these causes (particularly on CG role)? Although What are the perceptual impacts of these causes (particularly on CG role)? Although behavioral disturbances may be mild, people in early stage are less aware of their cognitive and behavioral deficits (Varies from caregiver’s view) Onor, et al. (2006). Different perception of cognitive impairment, behavioral disturbances and functional disabilities. American Journal of Alzheimer’s Disease, 21, 333 -338.

 What is the relational impact of the causes (and CG reaction to them)? What is the relational impact of the causes (and CG reaction to them)? This perception discrepancy may disrupt the relationship between the caregiver and the person with dementia (This disruption contributes to earlier institutionalization)

 What is the role of solution-focused counseling to treat these causes? Address behavioral What is the role of solution-focused counseling to treat these causes? Address behavioral symptoms in early stage Do so through health promotion activities; early stage persons are more willing to participate in a well organized program Fitzsimmons, S. & Buetter, L. L. (2003). Health promotion for the mind, body, and spirit for older adults with dementia. American Journal of Alzheimer’s Disease, 18, 282 -290.

 What are the results of solution-focused counseling coupled with dementia activity programs? Promotes What are the results of solution-focused counseling coupled with dementia activity programs? Promotes and maintains optimal health for both early stage person and caregiver Quality of life for both

 Cognasium Gymnasium for the Brain From a clinical perspective: Studies indicate that despite Cognasium Gymnasium for the Brain From a clinical perspective: Studies indicate that despite the progressive nature of dementia, individuals with Alzheimer’s disease can still learn and maintain their cognitive capacity through cognitive training Sitzer et al (2006). Cognitive Training in Alzheimer’s Disease: A Meta-analysis of the Literature. Acta Psychiatrica Scandinavica, 114, 75 -90

 Cognasium From a research perspective: Research indicates the human brain can reorganize after Cognasium From a research perspective: Research indicates the human brain can reorganize after damage and experience functional improvements, even in neurodegenerative diseases such as Alzheimer’s disease Cognitive training can be effective for managing symptoms in individuals with early stage Alzheimer’s disease and related dementias Yu et al (2009) Cognitive Training for Early-Stage Alzheimer’s Disdease and Related Journal of Gerontological Nursing, 35(3), 23 -29 De

Cognasium From a counseling perspective: It is a solution-oriented It is a type of Cognasium From a counseling perspective: It is a solution-oriented It is a type of redirection for and by the caregiver It is focused on the future and is activity-based It de-pathologizes dementia and emphasizes remaining capacities

 Pre-Clinical Cognasium Encourages better health practices in the caregiver Nutrition, exercise, cognition and Pre-Clinical Cognasium Encourages better health practices in the caregiver Nutrition, exercise, cognition and socialization may impact Alzheimer’s risk Outreach is accomplished through Brain Fitness Workshops Popular with pre-clinical senior adults for whom Alzheimer’s is greatest health worry

 Post-Diagnosis Cognasium Applicable to Early Stage Alzheimer’s Patients Including persons with MCI Dyadic Post-Diagnosis Cognasium Applicable to Early Stage Alzheimer’s Patients Including persons with MCI Dyadic approach with caregiver and disease recipient; supports caregiver self-efficacy Based on an individualized Cognasium Plan (ICP)

 How does Cognasium address caregiver selfefficacy? Psychologist Albert Bandura has defined self-efficacy as How does Cognasium address caregiver selfefficacy? Psychologist Albert Bandura has defined self-efficacy as our belief in our ability to succeed in specific situations. Caregivers believe they can perform well and view their difficult tasks as doable if not something they can master

 How does Cognasium address self-efficacy of the early stage person? People with dementia How does Cognasium address self-efficacy of the early stage person? People with dementia describe it as isolating and life-changing They lose jobs, volunteer opportunities, ability to drive, connections to family and friends Support groups for caregivers; what about the ES person?

 How does Cognasium address self-efficacy of the early stage person? An Individualized Cognasium How does Cognasium address self-efficacy of the early stage person? An Individualized Cognasium Plan (ICP) for the ES person is a direct intervention and support It empowers them to provide input to family and counselor Opportunity to make friends with others in the program – staying connected and feeling supported

 Cognasium defeats nihilism The ICP is for both the caregiver and the ES Cognasium defeats nihilism The ICP is for both the caregiver and the ES person The caregiver/disease recipient dyad enters counseling in disarray – through counseling, roles are redefined Counseling is offered individually and as an empowered dyad Scene from “Diminished Capacity”

 Cognasium Provides a personhood- affirming approach to the disease recipient without seeming to Cognasium Provides a personhood- affirming approach to the disease recipient without seeming to De-emphasizes stress-burden for CG and addresses their needs too - provides respite without seeming to Cognasium is action-oriented; a natural response to needs Cognasium Approach: Organic, family- oriented, connective, reinforcing, transforming

Cognasium is possible only after addressing the caregiver’s needs Caregiver Support and Counseling Advance Cognasium is possible only after addressing the caregiver’s needs Caregiver Support and Counseling Advance Stages Diagnosis Pre- and post-testing shows ● Reduced depression ● Enhanced social support ● Capacity to manage symptoms Cognasium

Cognasium is possible only after addressing the caregiver’s needs Caregiver Impacts Some caregivers have Cognasium is possible only after addressing the caregiver’s needs Caregiver Impacts Some caregivers have little emotional difficulty More than 40% have high emotional stress About 1/3 have symptoms of depression Caregiver stress is related to nursing home placement, but caregiver stress is often just as high after nursing home placement Cognasium Objective: Caregiver Intervention

What about Alzheimer’s Caregiver Impacts? Compared with other unpaid caregivers of people with Alzheimer’s What about Alzheimer’s Caregiver Impacts? Compared with other unpaid caregivers of people with Alzheimer’s and other dementias Are more likely to report fair or poor health ● Are more likely to say that caregiving made their health worse ●

There are Factors that Worsen the Impact of Alzheimer’s Caregiving Behavioral symptoms of the There are Factors that Worsen the Impact of Alzheimer’s Caregiving Behavioral symptoms of the care recipient Co-existing medical conditions of the care recipient Lack of perceived help from other family members and friends Belief that one has no choice about caregiving Many personality characteristics of the caregiver and the care recipient and their prior relationship

The reality of Alzheimer’s Caregiver Impacts Many Alzheimer’s/dementia advocates say that 40%, 50%, 60% The reality of Alzheimer’s Caregiver Impacts Many Alzheimer’s/dementia advocates say that 40%, 50%, 60% of caregivers dies before their care recipient There is no data to support that statement One study of caregivers in general found that caregivers who were experiencing strain were 63% more likely to die than non-caregivers; over 4 years, about 17% of the caregivers died compared with almost 11% of the non-caregivers

In our own state: Alzheimer’s Realities in Utah In 2010, there were 32, 000 In our own state: Alzheimer’s Realities in Utah In 2010, there were 32, 000 persons with Alzheimer’s disease in Utah (70% of all dementias) Utah will experience a 127% growth in Alzheimer’s prevalence from 2000 to 2025, highest in the nation There are 101, 000 Utah dementia caregivers They provided 115 million hours of unpaid care This care was valued at $1. 3 billion According to 2010 Facts and Figures Report, reported to Congress in May, 2010

What caregivers tell us: Top 10 Caregiver Dilemmas Why do Alzheimer’s Caregivers reach out What caregivers tell us: Top 10 Caregiver Dilemmas Why do Alzheimer’s Caregivers reach out for help? A recent survey of Helpline calls, revealed the Top 10 Caregiver dilemmas (regarding the Alzheimer’s loved one) ● 30% wanted to know, “Is it Alzheimer’s? ” (What are the signs and symptoms? ) 16% wanted to know how to get help caring for a loved one at home ● ● 11% wanted help due to burnout ● 11% needed help finding a diagnosis ● 9% were seeking help with disturbing behavior

Top 10 Caregiver Dilemmas Helpline survey continued… 8% said they could not handle care Top 10 Caregiver Dilemmas Helpline survey continued… 8% said they could not handle care at home anymore ● ● 5% were seeking help with coping skills ● 5% were in crisis and needed emergency help ● 3% had questions about legal and financial issues ● 2% needed help dealing with family conflict

 Care Consultation Helpline The progression of the disease is different for each – Care Consultation Helpline The progression of the disease is different for each – tailor the inter- vention A Plan to retained skills Diagnosis for Life and Care Accurate assessments are essential Plans identify coping strategies for CG and well-being and selfesteem for ES person Cognasium Goal: Link diagnostic and medical care with counseling and supportive services Richards et al (2003). Defining “early dementia” and monitoring intervention. Aging and Mental Health, 7, 7 -14

Physicians seek such services for patients National Survey of Physicians listed these unmet needs Physicians seek such services for patients National Survey of Physicians listed these unmet needs in caring for dementia patients (a variety of management needs not available for patients/caregivers through traditional medical practices): ● More support of families of patients Support groups, case management, financial management (we call it “financial emotions”) ● ● Instrumental support, homecare services (transportation and shopping) ● Identifying appropriate living situations living, long term care setting and treatment) (assisted

National Survey of Physicians Continued… Physician listed these unmet needs in caring for dementia National Survey of Physicians Continued… Physician listed these unmet needs in caring for dementia patients (specific needs regarding patient safety were mentioned): Safety (of living situation), home assessments, respite or backup care, dispensing of medications, unsafe driving ● ● Help with patient wandering and dementia abuse ● Psychiatric help available as rapidly as needed Concern about helpfulness of Adult Protective Services ●

Before Cognasium… One physician stated, “We have not referred any patients; it's usually family Before Cognasium… One physician stated, “We have not referred any patients; it's usually family members who find these resources. We do not know of much. ” Another physician stated, “I think what they do is give families some information and resources for daycare and nursing homes that have Alzheimer's settings. I don't know if there is an actual office to go in and get help. ” Physicians in the survey estimated that about 40% of their patients were above age 65 and about 10% of their patients had cognitive impairment, Alzheimer’s disease, or another form of dementia

After Cognasium… One physician stated, “We would evaluate the patient, then neurology, and then After Cognasium… One physician stated, “We would evaluate the patient, then neurology, and then the Alzheimer's Association can provide us with the kind of help that they can provide. So if we can have the physician, the Alzheimer's Association, and the family sitting together in one room it makes things better. ” Another physician described the ideal Alzheimer’s Association partnership: “a multidisciplinary network that you can call on to go to the patient's house, make an assessment, give us some feedback, and maybe provide a therapist to help the family adjust and help with medications. [The goal would be] to have a team that we can rely on and still be able to be in charge of the medical issues. ” Physicians like the case management of practice patients provided by the Alzheimer’s Association

Cognasium Addresses Needs of People in Early-Stage Early diagnosis of ADRD is necessary to Cognasium Addresses Needs of People in Early-Stage Early diagnosis of ADRD is necessary to establish a baseline and track changes, target interventions to maintain functioning, make plans, and ensure adequate medication prescription and use People with ADRD maintain awareness more than is realized. It is important to acknowledge this by including them in care planning and allowing them to be part of decision making The ADRD person’s perception of abilities may not be updated to self-ensure safety. Caregiver must be vigilant to maintain safety

Cognasium is a type of Cognitive Training -pharmacological intervention to improve cognition) (non The Cognasium is a type of Cognitive Training -pharmacological intervention to improve cognition) (non The human brain can reorganize after damage and experience functional improvements, even in neurodegenerative diseases such as Alzheimer’s disease Cognitive training can be effective for managing symptoms in individuals with early stage AD and dementia Evidence is emerging regarding the effectiveness of cognitive enhancement interventions such as memory aids, neuropsychological rehabilitation and reality orientation for managing symptoms

Neuropsychiatric Inventory Questionnaire Assesses domains of dementia behavior including their frequency and severity. Twelve Neuropsychiatric Inventory Questionnaire Assesses domains of dementia behavior including their frequency and severity. Twelve domains include agitation, depression, anxiety, apathy, etc. Assesses behavioral changes based on standardized caregiver interview Assessment of caregiver distress based on integrated scale to evaluate distress associated with behavioral changes in the person with dementia Supports teaching and communication with caregivers based on changes in the symptom ratings and supports counseling intervention

Neuropsychiatric Inventory Questionnaire üHallucinations üDisinhibition üDelusions üEuphoria üAgitation/aggression üApathy üDysphoria/depression üAberrant üAnxiety üSleep üIrritability Neuropsychiatric Inventory Questionnaire üHallucinations üDisinhibition üDelusions üEuphoria üAgitation/aggression üApathy üDysphoria/depression üAberrant üAnxiety üSleep üIrritability üAppetite motor behavior & night-time change and eating change Dr. Jeffrey Cummings, http: //npitest. net/about-npi. html

Neuropsychiatric Inventory Questionnaire – Key CG indicators Agitation/aggression ________ Distress 33% reduced Anxiety________ 16% Neuropsychiatric Inventory Questionnaire – Key CG indicators Agitation/aggression ________ Distress 33% reduced Anxiety________ 16% increased Apathy__ _____ Sleep & night-time change_______ Appetite and eating________ - Eighteen Cognasium Dyads, eight- months post-test, April, 2011 45% reduced 12% reduced 16% reduced

 Activity-Based Dementia Care Why Cognasium Works Safe environment for anger, shock and tears; Activity-Based Dementia Care Why Cognasium Works Safe environment for anger, shock and tears; hope and support is provided “There is life after diagnosis” through socialization, exercise, nutrition and cognitive stimulation We are “Making Sense of Alzheimer’s” (branded Utah Symphony collaboration) “Making Sense of Alzheimer’s” is a branded collaboration with the Utah Symphony that garnered national attention in 2010

 Activity-Based Dementia Care Why Cognasium Works It is a form of the “chronic Activity-Based Dementia Care Why Cognasium Works It is a form of the “chronic care model” Patients (and their families) become more informed and activated Interventionists are more proactive, which should result in improved clinical and functional outcomes Intervention with caregiver results in improved neuropsychiatric symptoms

 Activity-Based Dementia Care Why Cognasium Works Cognasium is a day retreat program for Activity-Based Dementia Care Why Cognasium Works Cognasium is a day retreat program for persons with Alzheimer’s and other dementias Participants have varying MMSE scores but socialize and support each other Impacts on home environment – less behaviors, increased caregiver well-being, delayed institutional placement LTC placement by plan, not crisis

 Activity-Based Dementia Care Why Cognasium Works Music and dementia care – annual collaboration Activity-Based Dementia Care Why Cognasium Works Music and dementia care – annual collaboration with the Utah Symphony and Utah Opera Visual arts in dementia care – engenders socialization and gives family members a new appreciation for the patient’s value and quality of life needs “I Remember Better When I Paint” “Meet Me at Mo. MA coming to Salt Lake (Utah Fine Arts Museum and CACIR)

 Activity-Based Dementia Care Why Cognasium Works Movement and dance in dementia care – Activity-Based Dementia Care Why Cognasium Works Movement and dance in dementia care – Art Access funded by Kennedy Foundation emphasizes dance as a means of reminiscence therapy Cognitive stimulation – learning a foreign language Some dyads are utilizing Mind-Body Bridging program as part of their ICP’s This spring, Wheeler Farm excursions

Every step we take addresses CAUSE, CARE and CURE of Alzheimer’s Next Steps in Every step we take addresses CAUSE, CARE and CURE of Alzheimer’s Next Steps in Utah COUNSELING - Integrate cognasium into day care for early stage, home and community-based care settings, primary care and programs with Area Agencies on Aging and Veterans Administration CAREGIVER SUPPORT – Reach, educate and empower caregivers, provide respite, self care training and caregiver conferences People + Science SUSTAINABILITY - implement evidencebased intervention and incorporate research findings, build resources through community and funding partnerships, professional training

Our challenges motivate us Utah’s Alzheimer’s Growth Rate 127% increase Projected from 2000 45% Our challenges motivate us Utah’s Alzheimer’s Growth Rate 127% increase Projected from 2000 45% increase to 2025 From 2000 To 2010 Highest of any state Source: Alzheimer’s Facts and Figures 2010, presented to Congress in March, 2010

Cognasium: Counseling intervention that emphasizes health promotion “Honest doc – if I’d known I Cognasium: Counseling intervention that emphasizes health promotion “Honest doc – if I’d known I was gonna live this long, I’d have taken better care of myself. ” Every client, interventionist and volunteer will be invited to develop an Individualized Cognasium Plan (ICP) for brain fitness

“When the Lord calls me home, I will leave with the greatest optimism for “When the Lord calls me home, I will leave with the greatest optimism for the future” - Ronald Reagan The compassion to care, the leadership to conquer