Principal Investigator: Dr. Eric Smith Presentation- websi… · 28.Tierney MC, Fisher RH, Lewis...
Transcript of Principal Investigator: Dr. Eric Smith Presentation- websi… · 28.Tierney MC, Fisher RH, Lewis...
Principal Investigator: Dr. Eric Smith Co-Investigators: Dr. Theresa Green Dr. David Hogan Dr. Colleen Maxwell Dr. Dawn Pearson Dr. Pamela Roach Ms. Anna Charlton Research Coordinator and Assistant: Tessa Kleissen Angela Zwiers
Overview
Background
Purpose
Method
Results
Discussion
Conclusion
Moving Forward
“Of all the things I’ve lost, I miss my mind
the most.” -Mark Twain
Dementia
Dementia characterized(1)… Diagnosis: DSM-IV(2), ICD-10(3), NINCDS/ADRDA(4)
Increasing age related correlation with Dementia (65+)(5-7)
Drive for service planning and research priorities
What about the younger generations? (<65)
[Background]
.
Early Onset Dementia (EOD) Defining EOD… - ‘Young’ onset dementia
Prevalence in UK: 35/100,000 (age 45-64)(8) Multiplied by 2 every 5 years(8)
Estimated prevalence in Canada:(9) Over 70,000 (<65) 50,000 (<60) 2,200 (<65) in Calgary
Characteristics:(10) Employed outside the home at the time of diagnosis Have dependent children or family Have significant financial burdens May be more physically fit or active than older patients
[Background]
The Impact
Caregiver paid working hours(10)
Caregiver burden:(20) stress(15-17) and distress(18-19), psychological and physical impact(10)
Need for tailored, age appropriate services for younger people with dementia(22, 23-25)
Need for tailored, age appropriate services for caregivers(21, 23-25)
[Background]
Aims
Purpose: Identify the needs of people with EOD of the Alzheimer’s type, to inform age-specific quality of life measures and development of support strategies for patients and caregivers in the early diagnosis phase.
Including individuals with EOD and LOD and their caregivers in this study will allow for a comparison of the concerns and needs of these two populations.
[Purpose]
What we are doing…
Participant Eligibility Criteria: Dementia diagnosis(2, 28, 29)
Age 50-64 (EOD), age ≥65 (LOD)
English speaking
Community dwelling
Living with caregiver
No co morbidities
No alternative cause of dementia other than Alzheimer’s Disease
Participants recruited from the Cognitive Neurosciences Clinic at Foothills Medical Centre
[Methods]
Quantitative Data
Collection and Analysis
Qualitative Data
Collection and Analysis
Compare or relate
Interpretation
Comparative Mixed Methods (quantitative & qualitative) Explore demographics and support needs of patients with EOD and LOD
How we are doing it… Data collection:
Surveys- standardized patient assessments(30-39)
1:1 and focus group interviews with EOD and LOD patients and caregivers
Individual interviews: n = 10-12 EOD patients and caregivers (40,41)
Focus Groups: 4 focus groups of 6-8 people
• 2 EOD groups, 2 LOD groups
Analysis: SPSS© and NVIVO 9©
Codes and interrelated themes(26)- a detailed view of participants(27)
[Methods]
Who Participated
[Results]
Quantitative Findings
[Results]
Qualitative Findings
[Results]
Loss •Independence •Personal time •Partner in marriage •Support/ •resources
Life & Self
•[single] parenting •Decreased work hours •Future planning •Acceptance of diagnosis •Financial concerns •Frustrations, exhaustion, uncertainty •Acquiring new knowledge and skills •Changes in personal quality of life
Quality of Life
•Safety concerns •Loss of sense of purpose, self worth •Change in marriage •Concern for future loved ones •Change in parent/child relationship
Path to Diagnosis •Acceptance of diagnosis •Loss of independence •Lack of support, resources
Preliminary Outcomes
Literature shows great variability in outcome and strategies utilized for caregiver interventions in dementia (40)
Effects are small (42)
Needs and issues unique to those under age 65: Age appropriate services and community programs
Age appropriate support options for both patient and caregivers identified
Research on caregiver interventions in EOD is extremely limited, and it is unknown if interventions designed for use in LOD samples are effective with EOD patients(43)
Emotional and psychosocial support for children/family
[Discussion]
Next Steps…
Development of patient/spouse information fact sheets outlining different cognitive and behavioral changes that may be experienced with EOD and current community support services.
With the EOD Support Group, formatting a position statement/proposal, to be presented to local health authorities and government in support of resources specific to the EOD group of patients and caregivers.
[Conclusion]
What might be an effective program idea? Interactive Web Page
Cell phone App
Community gatherings/ social groups
How far can awareness and education go?
What about the children?
Questions to Ponder…
[Moving Forward]
Questions or Comments?
Acknowledgements
Special thanks to: TM Kleissen, A. Zwiers and S. Gandhi for their help with interviews, analysis and preparation of presentation and poster materials
To the Cognitive Neuroscience Clinics for screening and access to EOD couples
And to the EOD Support Group for their stories
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