Individuals hearing issues from a young age.Individuals hearing issues from a young age.

Individuals
who have Down syndrome (DS) are known to have a reduced life expectancy
compared to the general population. This is because there is an increased risk
of acquiring comorbidities throughout their life and also, being born with life
limiting conditions. (British Medical Journal,
2017)

 

DS is
often linked with a poor immune system and poor muscle tone. Both these
problems can then lead to secondary conditions like pneumonia and gastrointestinal
issues. There is around a 40-60% chance of a DS baby being born with congenital
heart defects, the risks of the treatment increases morbidity. There are also
increased chances of a child with DS contracting leukaemia before the age of
five, which if treated effectively, still poses a future threat throughout the
lifespan. Thyroid issues also present an increased risk later on in life. (Glasson E. J., 2014)

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As DS
is an intellectual as well as physical disability, the risk of acquiring
dementia, usually Alzheimer’s is dramatically increased. This commonly occurs
at a younger age compared to the general population.

Sight
and hearing often diminish at a premature age. People with DS often experience sight
and hearing issues from a young age. (Glasson E. J., 2014)

 

End
of life care for people with DS can be challenging. As there is a significant
increase in the chances of someone with DS contracting dementia, careful
consideration needs to be taken as to the end of life care pathway that is
implemented. Research has shown that this increased tendency to dementia leaves
them less likely to be able to receive the care they need at home and a
subsequent transfer to a nursing home setting later on in life can be very traumatic
and greatly contribute to their decline. Establishing the right care route near
to the end of life is paramount in ultimately ensuring there is a dignified
death. (Patti, 2010)

 

Following
basic care principles when an individual with DS is approaching the end of
their life is also key in ensuring a dignified death. Preventing any suffering
or pain and improving quality of life for the individual and their families is
necessary. This is achieved by early identification and prompt assessment so an
end of life care pathway can be drawn up. (Public Health England , 2014)   

 

There
is evidence which suggests that effective end of life care for people with learning
disabilities including DS could be improved. For instance, there may be little
effective  support for the individual or
their families. Care staff may not identify that  the individual was coming to the end of their
life and so not provide appropriate treatment.

Public
Health England published in 2008 an “End of Life Care Strategy” with
recommendations to combat this systemic issue. (Public Health England , 2014)

 

An
individual with DS my not be able to clearly articulate their feelings.  It is important to ensure they have the
adequate care they need and familiar people around them when the end of their
life is imminent and to ensure all alternative care pathways have been accessed.
Ensuring the individual is in a familiar environment, pain free and with people
they know will help achieve a dignified death. (Public Health England , 2014)