The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and Training

The Reitman Centre CARERS Program Joel Sadavoy MD, FRCP, Founder Geriatric Psychiatry, FCPA

(Distinguished)Professor and Sam and Judy Pencer Chair in Applied General Psychiatry, University of Toronto;

Head Community and Geriatric Psychiatry Services, Mount Sinai Hospital Toronto;

Valeria Grofman MSW RSW

Presentation to IFA, May 30 , 2012

Objectives

1.To understand stress and burden of carers dealing with dementia2.To describe the Reitman Centre CARERS Approach 3.To describe the CARERS Problem Solving approach4.To demonstrate use of simulation- videos5.To present the evidence for effectiveness of this approach6.To describe and demonstrate the CARERS suite of learning tools7.To describe the advocacy and policy activities8.To open a dialogue on addressing carer’s specific needs.

Is John’s Problem Common?

Statistics

Approximately 500,000 Canadians are living with dementia including Alzheimer’s and other types of dementia Number will increase to approximately 800,000 by 2031 Unpaid caregivers provide most of the care for those living with dementia However, they have not historically been considered to be in need of or entitled to care themselves.

Replacement /imputed costs for unpaid carers

Can 2009 CAD $25-$26 billion (Hollander

et al 2009) UK 2007 - £87 billion (Buckner and Yeandle 2007)

US 2006 - US$354 billion (Gibson and Houser 2007)

Aus 2005 - A$30.5 billion. (Access Economics Pty Limited 2005)

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Family Caregivers Provide Essential Dementia Care

• Daily management of behaviour and safety• Basic and Instrumental ADL’s

• Early stages: complex tasks like banking or driving• Later stages: everyday functions like feeding, dressing,

safety, decision making (treatment, finances, long term care)

•Lund, Geriatric Nursing 2005; 26: 152

Caregiver Burden

Physical and psychological risks of caregiving Strongly associated with behavioural disturbances Up to 90% of persons with dementia have significant BPSD

that challenge and upset caregivers (see review by Sadavoy et al 2008)

Apathy is the commonest BPSD and impairs function (Mega 1996, Boyle et al 2003)

Causes of Caregiver Burden

Inadequate knowledge and skills – Lack of understanding of the disease and the management of

behaviours especially aggression and depression

Practical issues– environment, finances, safety

Psychological factors– Helplessness, hopelessness, role captivity, loss of the person

and relationship (dementia has been called a “de-selfing” disease), renewal of old conflicts, fear

A Model of Caregiver Burden

Poor knowledgePoor health

Female carerSpouse carer

IsolationGuilt

AnxietyDepression

ShameImmature personality

Poor relationshipEmotion focused coping

Poor knowledgePoor health

Female carerSpouse carer

IsolationGuilt

AnxietyDepression

ShameImmature personality

Poor relationshipEmotion focused coping

Physical illnessDementia

Loss of functionBPSD

CaregiverBurden

Physical illnessDementia

Loss of functionBPSD

CaregiverBurden

KnowledgeSkills

Good healthSupportRespiteHumourEmpathyMaturity

Good relationshipProblem solving

approach

KnowledgeSkills

Good healthSupportRespiteHumourEmpathyMaturity

Good relationshipProblem solving

approach

Adapted from Brodaty, International Psychogeriatrics 1996; 8 (S3): 455

Relief of Burden

Overall, the data show that some interventions enable caregivers to enhance their knowledge, coping skills and management of care recipient behaviours which in turn decreases burden and improves quality of life for both caregiver and care recipient

Combined Carer/Care recipient programs work best Problem-focused intervention is most effective

– Teaching skills to manage specific behaviours rather than offering general principles is most effective

– Education intervention should be directly linked to the persons problems, and focused on the practicalities of looking after them

The process

Intervention Intervention Change Change Therapeutic Alliance

Our philosophy

Comprehensively addressing the needs of caregivers is a primary and essential component of the care of individuals with dementia

Contrasts with the traditional framework of intervention for dementia.

Entrance point is often focal medical diagnosis of dementia

Specificity

The Reitman Centre For Alzheimer’s Support and Training

3 Key Mandates

Comprehensive Services for Carers Training, Collaboration, Innovation and

Research Policy and system development

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The Cyril & Dorothy, Joel & Jill Reitman Centre for The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and TrainingAlzheimer’s Support and Training

A centre for caregivers living at home with family A centre for caregivers living at home with family members who have dementia:members who have dementia:

–Individual and family interventions–CARERS Program–Access to the Outpatient Geriatric Mental Health Clinic

A training Centre for professionals dealing with dementia and caregivers

The CARERS Program

Phase One - assessment

Phase Two: 10 week caregiver group program

1.Group education and problem solving technique

2.Skills training and simulation Phase Three: Monthly maintenance groups for one

year following the group

Concurrent arts-based group program for the person with dementia

Evidence-based Clinical Goals of Comprehensive Care

• Enhanced practical skills• Improved coping/problem solving• Improved emotional regulation• Enhanced sense of mastery/self-efficacy • Reduced depression/anxiety• Improved social (marital) interaction and support • Adequate professional support

Acton et al, 2001; Brodaty et al, 2003; Burns et al, 2001: Gitlin et al, 2003; Kneebone et al, 2003; Pusey et al, 2000; Schultz et al, 2002; Smits, 2007; Van den Wijngaart, 2007

Problem-Solving Therapy (PST)

Goals:

– Understand the link between current feelings and problems

– Increase ability to clearly define current problems

– Employ a structured way of solving problems– Increase confidence and mastery in problem

solving

PST Rationale

Caregivingproblems

Weak problem solving associated with depression and burdenOverly intense emotions contribute to poor problem solving. Emotion-focused coping is often maladaptive. Solution-focused coping improves control, mastery and coping capacity.

Emotions Overwhelm Carers abilities to clearly see their problems preventing effective problem solving.

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How do we help John?How do we help John?

Defining the key problems with John:Defining the key problems with John:

1.1.Having no time for himselfHaving no time for himself

2.2.Not knowing how to introduce help, in particular Not knowing how to introduce help, in particular around around

3.3.Constant complaints on physical pain Constant complaints on physical pain

4.4.Dealing with accusationsDealing with accusations

5.5.Not knowing how to respond when Judy is sad or Not knowing how to respond when Judy is sad or anxiousanxious

6.6.What to say and do when Judy wishes to go homeWhat to say and do when Judy wishes to go home

Seven Stages of PST

1. Clarify and define problems: problem list2. Establish objectives and achievable goals together3. Brainstorm and work out solution alternatives for each

problem4. Discuss pros and cons of solutions and create decision

guidelines5. Choose the preferred solution(s)6. Discuss implementation of the solution(s)7. Evaluate the outcome

Using the PST method

Example: “I have no time for myself”

Step one: Clarify:– “I have no time for myself on the weekend. In the afternoon

when I want to relax and read a book and just wind down, my wife gets very clingy and want my attention”

step five: what solutions John has chosen: What possible options are available:

– Asking for more help from Judy‘s friends from church– Enrolling in a weekend day program– Hiring paid caregiver

Video

Demonstration –

Video

Demonstration – Eric

Role play & Simulation: transferring knowledge to practice

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Role play & Simulation

Live face-face encounter between a carer and standardized patient (SP)

Provides experiential learning Used to re-enact a situation of interpersonal challenge Can identify feelings, patterns of behaviour, and knowledge

gaps

Common Interpersonal Challenges

Accusations against the caregiver Saying no to unreasonable demands Dealing with confusion, opposition and resistance,

repetitiveness, angry outbursts Moderating angry expectations of caregiver Asking for help

Skills Learned through Simulation

Reflection rather than reaction Avoidance of the inclination to defend and use logic A focus on the other person Responding to the emotion of the other person Staying in the moment Maintaining a connection Use of non-verbal skills to communicate empathy Use of simple statements rather than questions

ProcessProcess

Scenarios acted out with simulated patient and caregiver

Timeouts break the action and discussion follows after which scenario is reenacted

Once comfort is achieved, the next scenario is presented. Usually 3 scenarios per group session

Emotional issues and conflicts emerge and are dealt with during the group process

Video

Demonstration –

Video

Demonstration – Margaret

CONCURRENT PROGRAM FOR THE PERSON WITH DEMENTIAEvidence shows caregivers are able to focus on their own needs when care recipients are cared for

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Concurrent Program For The Person With Dementia

What is the Program? 0ccurs simultaneously to Caregiver Group Uses creative and artistic activities Focus on cognitive and interpersonal stimulation

Goals: Connect verbal/cerebral with non-verbal/embodied expression

(Arts) Promote social connection for participants Utilize and focus on strengths and interests of participants and

maximize personhood of ill family memeber

Method:

creative use of drama, movement and dance, music and sound, and story-telling exercises; photography

BREAK

The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and Training

The Reitman Centre CARERS Program Joel Sadavoy MD, FRCP, Founder Geriatric Psychiatry, FCPA

(Distinguished)Professor and Sam and Judy Pencer Chair in Applied General Psychiatry, University of Toronto;

Head Community and Geriatric Psychiatry Services, Mount Sinai Hospital Toronto;

Valeria Grofman MSW RSW

Presentation to IFA, May 30 , 2012

THE REITMAN CENTRE CARERS PROGRAM

Evidence and Evaluation

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Demographic characteristics (N=61)Demographic characteristics (N=61)

Evidence-based Clinical Goals of Comprehensive Care

• Enhanced practical skills• Improved coping/problem solving• Improved emotional regulation• Enhanced sense of mastery/self-efficacy • Reduced depression/anxiety• Improved social (marital) interaction and support • Adequate professional support

Acton et al, 2001; Brodaty et al, 2003; Burns et al, 2001: Gitlin et al, 2003; Kneebone et al, 2003; Pusey et al, 2000; Schultz et al, 2002; Smits, 2007; Van den Wijngaart, 2007

The Reitman Centre CARERS Program: Measuring Outcomes

8 pre/post scales each addressing a key program goal were administered:

Coping / Problem Solving – Coping Inventory in Stressful Situations (CISS-A, E and T) (Endler &

Parker, 1990)

Emotional Regulation / Expressed Emotion– Five Minute Speech Sample (Magana et al., 1986)– Geriatric Depression Scale (Yesavage & Brink, 1983)

Caregiver Burden– Short Zarit Burden Interview (Bedard et al., 2001)

– Revised Memory and Behavioural Checklist (Teri et al., 1992)

Mastery / Self-efficacy– Mastery (Pearlin & Schooler, 1978)

– Overload (Pearlin et al., 1990)

– Role Captivity (Pearlin et al., 1990)

– Care-giving Competence (Pearlin et al., 1990)

The Reitman Centre CARERS Program: Overall findings (N=61)

Pre- and post- scores were significantly different for the following outcome measures:– Emotion-oriented stress coping (p<0.05)– Caregiving Competence (p<0.0001)– Overload (p<0.05)

Carers with more compromised baseline scores in the following constructs experienced additional statistically significant improvement in the following measures: – Depression– Task oriented coping – Mastery– Caregiving Burden

Carers’ Satisfaction: In their own words (N=61)

Participants were asked to fill out a satisfaction survey at the end of the 10-week CARERS program

4 different components of the CARERS program were evaluated by 61 participants:– Clinical aspects of the program (i.e. impact on

psychological functioning and skills building, knowledge base of clinicians etc.)

– Setting (i.e. duration, size and make-up of the groups)

– Simulation (i.e. accuracy of simulation in portraying difficult situations at home)

– Overall satisfaction

Some Key Outcomes

Almost all said the groups were important & effective - skills training changed their behaviour, attitudes behaviour, attitudes and feelingsand feelings about care recipient

Many specific problemsspecific problems solved – driving, alcoholdriving, alcohol Practicing and repetitionPracticing and repetition were among the most

helpful interventions HeterogeneousHeterogeneous groups are acceptable Professional support Professional support and camaraderie of the camaraderie of the

group group were highly valued MaintenanceMaintenance - 1 hour group/month

Reframing the Focus of Intervention

Active support of caregivers is a primary and essential component of the care of individuals with dementia

Contrasts with the traditional framework of intervention.

Entrance point is focal medical diagnosis of dementia

We propose an integrated model from the beginning that includes dementia and caregiver concurrently

Implies new protocol of evaluation

Catalyzing Policy and System Change

International summit – café conversation at FICCDAT

Key questions1. Can an evidence-based carers’ program be a catalyst to propel

changes in the health and social care system? If not, why not? If so, in what ways and how does change happen?

2. What are the factors or conditions that are essential for enabling or inducing change? That is, without “x”, change will not occur

Main outcomes :1. Recognize carer as a group and create a social movement2. Solution oriented as a means to sustain political attention3. Legal recognition of carers at a National level 4. Evidence base data is essential5. Collaborative partnerships

The Reitman Centre CARERS Program: Knowledge Exchange

& Program Dissemination

Program Dissemination Courses for Professionals

– Full Reitman Centre CARERS training– Specialized PST training

Educational Tools for Dissemination– Manuals– E-Learning

The Reitman Centre CARERS Program: Examples of Clinical Activity and Program dissemination

LOCAL MSH Reitman CARERS Program: 20 groups completed,

2 underway and 2 scheduled Yee Hong Geriatric Care Centre and MSH Wellness

Centre: 2 groups completed Holy Blossom Synagogue – 1 group underway and 1

scheduled

ACROSS CANADA – Calgary, Alberta Chinese Citizen Elder Care association: 1 group

completed Alzheimer Society, Calgary: 1 group completed Wing Kei Nursing Home: to follow

The Reitman Centre CARERS Program: Educational Tools for Knowledge Exchange & Program Dissemination

Web-based e-learning program

Theories and practical applications

Interactive

Enriched with vignettes and verbal comments

User-friendly Certification program

Paper-based class-room presentation

Focuses on “Problem-solving Techniques” and “Simulation”

For specialized MH & complex care health professionals

Paper-based CARERS Program Manual

Comprehensive manual for health professionals to deliver CARERS Program

Includes an implementation guide translated into Chinese

Website

Demonstration

Website

Demonstration

http://142.223.189.191/static/carers/

http://www.mountsinai.on.ca/static/carers/?page_id=4

Policy and Advocacy

Identify caregivers as target population (HRSDC;MOHLTC)

Recognition of need for specific training of professionals (CCAC;Sick kids)

Development and leadership of training and education strategies (CCAC)

Integrating caregivers into dementia strategies (Provincial BSO)

Developing collaborative programs of intervention for caregivers (BSO)

The Reitman Centre CARERS Program: Academic Activity

University of Toronto Accreditation

E-learning Modules Face-to-face Didactic & Interactive

Workshop for PST Face-to-face three day Didactic &

Interactive Workshop for the entire Reitman Centre CARERS program

Train the trainers

CURREN

T FUTU

RECU

RRENT FU

TURE

The Reitman Centre CARERS Program: Future Directions

Reitman Centre, Mount Sinai Hospital

Community Engagement Program Development Health professionals & Carers Training Evaluation & Research Policy & Advocacy

Discussion

• What are some thoughts about an integrated model from the beginning that includes dementia and caregiver concurrently

• How to disseminate in a strategic and systematic way - • Can e-learning be a sufficient training platform?• What are some strategies for reaching rural populations?• Is it possible to use a method like this over different form of

technology? Has anybody had experience doing this?• How to assess caregiver to know what type of intervention

they need• What criteria should be used to assess caregiver need and

preferred intervention – what is the differential criteria if any?

• Protecting the integrity of the method when disseminated • How much variation from the standard is OK and how to

measure that

The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training

Mount Sinai HospitalMount Sinai Hospital

+1-416 – 586 – 4800 extension 5192+1-416 – 586 – 4800 extension 5192

www.caregiverMSH.cawww.caregiverMSH.ca