Page 9 - Changes and Challenges

Dementia
Changes and Challenges
The Lived Experience.

What I wish to share here is the real experiences not only of myself, but of
many others living with Dementia. For any “intervention” to work successfully
for people living with Dementia, we need be involved in all aspects of its
design, development and implementation. Our lived experience should inform
the groundwork of any procedure, program, or device that proports to help us
live our lives.

Dementia as A Disability.

Dementia has been recognised as a disability by the United Nations. As such
people with Dementia have the same human rights as any other disabled
person under the United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD). Governments and many professionals have been slow
to realise the implications of this. Indeed, many professionals do not see
Dementia as a disability and continue dismiss its true impact.

1
The OECD stated that ‘people living with dementia receive the worst care in
the developed world’ (2015). Today it is still rare to find people living with
Dementia represented at disability conferences. Some forms of Dementia are
listed by the NDIS but by no means all.

As a disability people with Dementia bay have many impairments, most of
which will not be “visible”. It is commonly believed that if a ‘program’ or
‘thing’ is developed to be truly Dementia enabling, it will be inherently
enabling to almost all disabilities.

It is also important to note that many of the impairments a person with
Dementia may have, while similar to a ‘mainstream’ impairment may be vastly
different in cause and ‘treatment’.

Consider hearing. Many people will exhibit hearing changes as they age. This is
often due to degradation of the sensory system i.e. damage to the
mechanisms of hearing or nerve damage. In many cases a simple hearing aid
can remedy the condition. A person with Dementia may exhibit similar

1 The Organisation for Economic Co-operation and Development
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