Counseling the Alzheimer’s Caregiver:

1. Do ederly people prefer watching TV or browsing Internet? Utah Chapter Impact on Self-Efficacy of the Caregiver and Disease RecipientAging in America ConferenceSan Francisco, April 28, 2011 Counseling the Alzheimer’s Caregiver: Presented by Sylvia Brunisholz, Nick Zullo and Sonnie Yudell, Alzheimer’s Disease Supportive Services Program of Utah

1. Do ederly people prefer watching TV or browsing Internet? Utah Chapter Solutions-Focused CounselingCaregiver Impacts and DilemmasA Plan for Life and CareIndividualized Cognasium PlanNeuropsychiatric Inventory QuestionnaireSelf-Efficacy of the Client Dyad We will talk about…

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

1. Do ederly people prefer watching TV or browsing Internet? 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

1. Do ederly people prefer watching TV or browsing Internet? Therapy is collaborative Uses the resources available to the clientProblems are reframed in a more positive way Solutions-Focused Counseling

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

1. Do ederly people prefer watching TV or browsing Internet? Reduced quality of life for both caregiver and disease recipientMore rapid decline trajectoryEarlier institutionalization What are the effects of these problems? Burgener, S.C. & Twigg, P. (2002). Interventions for persons with irreversible dementia. Annual Review of Nursing Research, 20, 89-124.

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

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

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

1. Do ederly people prefer watching TV or browsing Internet? This perception discrepancy may disrupt the relationship between the caregiver and the person with dementia(This disruption contributes to earlier institutionalization) What is the relational impact of the causes (and CG reaction to them)?

1. Do ederly people prefer watching TV or browsing Internet? Address behavioral symptoms in early stageDo so through health promotion activities; early stage persons are more willing to participate in a well organized program What is the role of solution-focused counseling to treat these causes? 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.

1. Do ederly people prefer watching TV or browsing Internet? Promotes and maintains optimal health for both early stage person and caregiverQuality of life for both What are the results of solution-focused counseling coupled with dementia activity programs?

1. Do ederly people prefer watching TV or browsing Internet? Gymnasium for the BrainFrom 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 trainingThe Cognasium Approach: Improving Dementia Care by Facilitating aPartnership of Disease Recipient, Caregiver and Physician Cognasium Sitzer et al (2006). Cognitive Training in Alzheimer’s Disease: A Meta-analysis of the Literature. ActaPsychiatricaScandinavica, 114, 75-90

1. Do ederly people prefer watching TV or browsing Internet? 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 diseaseCognitive training can be effective for managing symptoms in individuals with early stage Alzheimer’s disease and related dementiasThe Cognasium Approach: Improving Dementia Care by Facilitating aPartnership of Disease Recipient, Caregiver and Physician Cognasium Yu et al (2009) Cognitive Training for Early-Stage Alzheimer’s Disdease and Related Dementia. Journal of Gerontological Nursing, 35(3), 23-29

From a counseling perspective: It is a solution-orientedIt is a type of redirection for and by the caregiverIt is focused on the future and is activity-basedIt de-pathologizes dementia and emphasizes remaining capacitiesThe Cognasium Approach: Improving Dementia Care by Facilitating aPartnership of Disease Recipient, Caregiver and Physician Cognasium

1. Do ederly people prefer watching TV or browsing Internet? Encourages better health practices in the caregiverNutrition, 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 worryThe Cognasium Approach: Improving Dementia Care by Facilitating aPartnership of Disease Recipient, Caregiver and Physician Pre-Clinical Cognasium

1. Do ederly people prefer watching TV or browsing Internet? Applicable to Early Stage Alzheimer’s PatientsIncluding persons with MCIDyadic approach with caregiver and disease recipient; supports caregiver self-efficacy Based on an individualized Cognasium Plan (ICP) Post-Diagnosis Cognasium

1. Do ederly people prefer watching TV or browsing Internet? 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 caregiver self-efficacy?

1. Do ederly people prefer watching TV or browsing Internet? People with dementia describe it as isolating and life-changingThey lose jobs, volunteer opportunities, ability to drive, connections to family and friendsSupport groups for caregivers; what about the ES person? How does Cognasium address self-efficacy of the early stage person?

1. Do ederly people prefer watching TV or browsing Internet? An Individualized Cognasium Plan (ICP) for the ES person is a direct intervention and supportIt empowers them to provide input to family and counselorOpportunity to make friends with others in the program – staying connected and feeling supported How does Cognasium address self-efficacy of the early stage person?

1. Do ederly people prefer watching TV or browsing Internet? Cognasium defeats nihilismThe ICP is for both the caregiver and the ES personThe caregiver/disease recipient dyad enters counseling in disarray – through counseling, roles are redefinedCounseling is offered individually and as an empowered dyad Cognasium Scene from “Diminished Capacity”

1. Do ederly people prefer watching TV or browsing Internet? Provides a personhood- affirming approach to the disease recipient without seeming toDe-emphasizes stress-burden for CG and addresses their needs too - provides respite without seeming toCognasium is action-oriented; a natural response to needs Cognasium Cognasium Approach: Organic, family- oriented, connective, reinforcing, transforming

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

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 aboutAlzheimer’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 areFactors 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% of caregivers dies before their care recipientThere 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 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 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 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

1. Do ederly people prefer watching TV or browsing Internet? Care Consultation Diagnosis Helpline The progression of the disease is different for each – tailor the intervention to retained skillsAccurate assessments are essentialPlans identify coping strategies for CG and well-being and self-esteem for ES person A Plan for Life and Care 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 patientsNational Survey of Physicians • 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 (assisted living, long term care setting and treatment)

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 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 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 AddressesNeeds 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 ofCognitive Training (non-pharmacological intervention to improve cognition) 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 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 • Hallucinations • Delusions • Agitation/aggression • Dysphoria/depression • Anxiety • Irritability • Dr. Jeffrey Cummings, http://npitest.net/about-npi.html • Disinhibition • Euphoria • Apathy • Aberrant motor behavior • Sleep & night-time change • Appetite and eating change

Neuropsychiatric Inventory Questionnaire – Key CG indicators Distress 33% reduced 16% increased 45% reduced 12% reduced 16% reduced • Agitation/aggression • Anxiety • Apathy • Sleep & night-time change • Appetite and eating _______________ _______________ _______________ _______________ _______________ - Eighteen Cognasium Dyads, eight- months post-test, April, 2011

1. Do ederly people prefer watching TV or browsing Internet? 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 stimulationWe 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

1. Do ederly people prefer watching TV or browsing Internet? Activity-Based Dementia Care Why Cognasium Works It is a form of the “chronic care model” Patients (and their families) become more informed and activatedInterventionists are more proactive, which should result in improved clinical and functional outcomesIntervention with caregiver results in improved neuropsychiatric symptoms

1. Do ederly people prefer watching TV or browsing Internet? Activity-Based Dementia Care Why Cognasium Works Cognasium is a day retreat program for persons with Alzheimer’s and other dementiasParticipants have varying MMSE scores but socialize and support each otherImpacts on home environment – less behaviors, increased caregiver well-being, delayed institutional placementLTC placement by plan, not crisis

1. Do ederly people prefer watching TV or browsing Internet? 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 MoMA coming to Salt Lake (Utah Fine Arts Museum and CACIR)

1. Do ederly people prefer watching TV or browsing Internet? 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 therapyCognitive stimulation – learning a foreign languageSome dyads are utilizing Mind-Body Bridging program as part of their ICP’sThis spring, Wheeler Farm excursions

Every step we take addresses CAUSE, CARE and CURE of Alzheimer’sNext 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 SUSTAINABILITY - implement evidence-based intervention and incorporate research findings, build resources through community and funding partnerships, professional training People + Science

Our challenges motivate us Utah’s Alzheimer’s Growth Rate 127% increase Projected from 2000 to 2025 Highest of any state 45% increase From 2000 To 2010 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 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 the future” - Ronald Reagan The compassion to care, the leadership to conquer

Counseling the Alzheimer’s Caregiver: