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.
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
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
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
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
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
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
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