The scope of home-based occupational therapy for adults with both
Down syndrome and dementia
A cross-sectional survey
Sujatha Raj (PhD candidate)
Dr. Mandy Stanley (Senior Lecturer)
Dr. Shylie Mackintosh (Senior Lecturer)
Dr. Caroline Fryer (Lecturer)
School of Health Sciences
Introduction- What is the problem?
 Rapid aging process compared to
the general population (Esbensen AJ, 2010)
 An increased predisposition to
develop younger-onset dementia
(De Vreese, 2012)
 Clinical presentation of dementia is
complex (Zigman, 2013)
 Causes occupational performance
dysfunction (Benejam, 2009)
Impact on informal caregivers
 Many adults with Down
syndrome reside with their
families (Carling-Jenkins et al., 2014)
 A sudden escalation in their
caregiving role (Janicki et al., 2010)
 Seek assistance as a ‘reactive’
response (Jokinen et al., 2012)
Why explore the scope of practice?
 No occupational therapy literature
 Unclear about the service provision
Research Questions
What is the scope of occupational therapy practice for adults with both
Down syndrome and dementia and for their informal caregivers living in their
home environments?
What are the potential enablers and barriers in providing occupational therapy
interventions for adults with both Down syndrome and dementia and for their
informal caregivers?
Methods
 A cross-sectional survey
 Web-based
 ‘SurveyMonkey-Advanced’ used for
data collection
 Expert panel involved in the survey
tool development
 Occupational therapists having
clinical experience with this specific
group
Results
United
States of
America
10%
Country of practice
Australia
16%
United
Kingdom
66%
Years of experience as an occupational therapist
100%
80%
68%
Percentage of 60%
responses 40%
13%
20%
18%
0%
0%
>10 years
6-9 years
2-5 years
Novice (< 2
years)
Canada
8%
Reasons for occupational therapy referral
Decline in ADL
Reasons for referral
Decline in IADL
Carer stress in providing appropriate care
Decline in cognitive skills
Decline in roles and routines
Decline in mobility
Decline in community skills
Frequent Falls
0%
20%
40%
60%
Percentage of responses
At all times/Most of the time
Sometimes
Rarely/Never
80%
Occupational therapy assessments for adults with both
Down syndrome and dementia
Assessment tools
Non-standardised tool
74%
Assessment of Motor and Process Skills
56%
Winnie Dunn Sensory Profile
28%
Canadian Occupational Performance
Measure
23%
The Modified Barthel Index or the Barthel
Index
9%
Functional Independence Measure
9%
I do not use an assessment tool
Functional Capacity Evaluation
5%
0%
0%
10% 20% 30% 40% 50% 60% 70% 80%
Percentage of responses
Interventions for adults with both Down syndrome and dementia
Use of compensatory strategies for ADLs
Use of environmental modifications
Advice for future functional needs
Improving safety within home environment
Use of task simplification methods
Use of compensatory strategies for IADLs
Improving leisure
Types of
interventions
Referral to other external agencies
Use of assistive device
Activities to improve cognitive functions
Community mobility training
Use of memory aids
0%
At all times/Most of the time
20%
40%
60%
Percentage of responses
Sometimes
Rarely/Never
80%
Occupational therapy for informal caregivers
Interventions
provided
Carer education on home safety
Carer education to use of equipment
Training to use task adaptations to assist care
recipient
Manual handling strategies to asssist care recipient
Re-structuring daily routines
Training to use of equipment to assist care recipient
Cognitive strategies to assist care recipient
Training to use home modifications to assist care
recipient
Disease related information advice
Relaxtion techniques
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Percentage of responses
At all times/Most of the time
Sometimes
Rarely/Never
Enabling factors for an effective service
Adults with both Down syndrome and
dementia
Picture. 1
Informal caregivers of adults with
both Down syndrome and dementia
Picture. 2
Hindering factors for an effective service
Adults with both Down syndrome
and dementia
Picture. 1
Informal caregivers of adults with both
Down syndrome and dementia
Picture. 2
Discussion
 Increasing number of referrals
 Variations in the service provision
 Limited services offered to informal
caregivers
 Under-resourced area
 Fragmented service delivery
Clinical implications
 Use best practice to improve
quality of care
 Increase resources (e.g. staffing,
funding)
 Team collaboration
 To recognise as a specialists
service
Future directions
 Develop the scope of practice
document
 Dementia guidelines for adults with
Down syndrome
 Develop dementia specific training
for clinicians
 Further research to show
effectiveness of home-based
interventions
Acknowledgements
 Supervisors: Dr Mandy Stanley, Dr Shylie Mackintosh and Dr Caroline Fryer
 Endeavour Endowment Challenge Fund
References
 Benejam B. (2009) Dementia symptoms in Down syndrome. International Medical Review on
Down Syndrome 13: 18-21.
 Carling-Jenkins R, Bigby C and Iacono T. (2014) Family experiences of supporting a person with
Down syndrome and dementia in Australia. In: Karen Watchman (ed) Intellectual Disability and
Dementia Research into Practice. London, UK: Jessica Kingsley, 145-160.
 De Vreese LM, U; De Bastiani, E; Weger, E; Marangoni, AC; Gomiero, T. (2012) Impact of
dementia-derived nonpharmacological intervention procedures on cognition and behavior in
older adults with intellectual disabilities: 3-year follow-up study. Journal of Policy and Practice in
Intellectual Disabilities 9: 92-102.
 Esbensen AJ. (2010) Health conditions associated with aging and end of life of adults with Down
syndrome. International review of research in mental retardation 39: 107-126.
 Janicki M, Zendell A and DeHaven K. (2010) Coping with dementia and older families of adults
with Down syndrome. Dementia 9: 391-407.
 Jokinen N, Janicki M, Hogan M, et al. (2012) The Middle Years and Beyond: Transitions and
Families of Adults with Down Syndrome. Journal on Developmental Disabilities 18: 59-69.
 Zigman WB. (2013) Atypical aging in down syndrome. Developmental Disabilities Research
Reviews 18: 51-67.
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