Quality care for people with Down syndrome and Dementia

Demographics:

Alzheimer’s disease in Down syndrome Age Specific rates N=201 40-49 Years –9.4% 50-59 Years-36.1% 60-69 Years-54.4%

Ref Prasher VP. Age specific Prevalence, Thyroid Dysfunction and Depression Symptomatology in adults with Down syndrome and dementia

The nature of dementia. The relationship between Down

syndrome and Alzheimer’s disease Communication strategies Responding to changed behaviour

Victorian Down syndrome and dementia workshop.

Diagnosis

Lifestyle

Models of care

Changing roles for disability workers

Issues:

The role of the General Practitioner and Disability worker

Centre for Developmental and Disability Services

CDAMS

Diagnosis

Loss of speech Disorientation Loss of daily living skills Changes in personality Long periods of inactivity or apathy The development of seizures

Signs of dementia in a person with an I.D.

Unknown number of people living at home with ageing parents

Community residential units Congregate care Day programs Supported employment

Lifestyle

Design and deliver support services based on what is important to the person.

Models of care: Person centred planning

Three steps: Planning Supports Feedback

Outcomes determined by the person being planned for are likely to result in a plan which increases:

Outcomes of Person Centred Planning

Choice Competence Respect Community participation

Models of Care: Person centred planning vs person centred care

developmental vs support increases choice vs limits choice to avoid

confusion maximises potential vs maintains existing

abilities whenever possible

Changes in program practices for disability workers

provide closer supervision maintain present levels of independence by

increasing staff supervision, prompts and hands-on care

modify the individual’s support plan to anticipate changing ADL needs

monitor and document increased episodes of confusion, disorientation or memory lapses

Strengthen AAV’s links with the disability service sector

Continued dialogue between AAV and disability stakeholders to promote understanding and relevance

Provide ongoing support and education for disability support workers

The Way Forward