Alzheimer’s Disease and Down Syndrome – Pathways of Care
Principal investigator: Dr Jenny Torr, CDDHV
Senior investigators: Dr Rachel Carling-Jenkins, CDDHV; Professor Teresa Iacono, LaTrobe;
Professor Chris Bigby, LaTrobe
This project has explored the pathways to diagnosis and assessment of people with
Down syndrome and Alzheimer’s disease at the Centre for Developmental Disability Health
Victoria (CDDHV), Monash University. It has also explored the changing care needs of this
group of people from the perspective of their primary carers. This research revealed that
there are barriers to accessing assessment, support and care via mainstream aged health
and care services, including lack of training and expertise of professionals, lack of guidelines
and in some cases discriminatory policy and practice.
Pathways to diagnosis and assessment have been mapped. Adults in group homes
had a relatively direct pathway to the university assessment clinic, regardless of whether or
not dementia was suspected. Pathways for those in other settings were convoluted with a
number of dead ends before arriving at CDDHV. Referral to mainstream services resulted in
re-referral to the university clinic. This mapping of pathways led the research team to
conclude that pathways to assessment are mediated by knowledge of a general health clinic
for adults with intellectual disabilities. Barriers to assessment include lack of knowledge of
family, carers and general practitioners of the risk of Alzheimer’s disease in people with
Down syndrome, and refusal or inability of mainstream services to provide services.
Three case studies were developed which examined the journey to care and support
of people with Down syndrome who have lived most of their lives with their parents and have
now developed Alzheimer’s disease. Each of the case studies highlighted the need for clear
pathways to care for people with Down syndrome and Alzheimer’s disease. Particular needs
for an increased awareness of the incidence and implications of early onset Alzheimer’s
disease in people with Down syndrome by health and social service providers and families
have been highlighted. The cases also revealed the haphazard access to services, and lack
of knowledge and expertise of mainstream service providers. There is an evident need for
clear policy to cogently address the needs of increasing numbers of people with Down
syndrome and Alzheimer’s disease.
A thematic analysis of interview transcripts with carers within the disability services
system revealed an uncertainty regarding the future of people with Down syndrome and
Alzheimer’s disease. It also revealed an inconsistent approach to transitions of care. There
is no clear policy guiding disability services which has led to an ad hoc approach towards
pathways of care post-diagnosis.
The analysis of interview transcripts also revealed the struggles carers faced in
implementing strategies and interventions for people who either are exhibiting challenging
behaviours or who are simply progressing through the stages of Alzheimer’s disease. The
need for a more coordinated approach to care which actively includes everyone involved
with people with Down Syndrome and Alzheimer’s disease (such as resident staff, families,
and day placement staff) was highlighted.
This research provides a platform for future research into aging in place and to the
trialing of intervention strategies. Such strategies will target minimizing confusion over the
cause of behaviours of concern, provide staff with direction regarding positive reinforcement
strategies to avoid the current ad hoc strategies being implemented, consider the
appropriateness of placements prior to decisions on transitions being made and contribute to
establishing best practice for care transitions.