Dementia-Contemporary perspectives for Social Inclusion of persons with Dementia

Johnsey Thomas, Clinical Psychologist

BRINGING DEMENTIA OUT OF THE SHADOWS

“Asking people with dementia their views may be difficult, but it does not mean it cannot be done”

(Goldsmith, 1996)

Dementia

Dementia is not a specific disorder or disease. It is a syndrome (group of symptoms) associated with a progressive loss of memory and other intellectual functions or a clinical state characterized by loss of function in multiple cognitive domains that is serious enough to interfere with performing the tasks of daily life.

Dementia:facing the epidemicWe look like this…

Diagnostic features

The most commonly used criteria for diagnoses of dementia is the DSM-IV (Diagnostic and Statistical Manual for Mental Disorders, American Psychiatric Association). …memory impairment and at least one of the following: aphasia, apraxia, agnosia, disturbances in executive functioning.

Enabled to…

play a full part in individual decisions about everyday matters and major decisions affecting their lives;

participate in the operation and management of services

influence improvements in the operation of services through, for example, prompting changes in the way in which referrals are made to medical services;

Enabled to…

have a voice in the wider community by, for example, changing attitudes to dementia through involvement in community groups.

In addition, involvement often leads to increased self-esteem and confidence for people with dementia. One person said: “It’s good to feel valued and to be a somebody, not a nobody” (Chaston et al 2004).

Enabled to…

have a voice in the policy-making process by, for example, campaigning for new life-enhancing resources; and

influence future service provision by, for example, introducing alternatives to traditional day care;

Minimal actions required for dementia care (based World Health Report - 2001)

Minimal actions required World Health R

Dementia: facing the epidemic

Benefits

Important to get persons views on ways to best support their day-to-day living

Provides insight into the human interface of dementia and technology

Provides insight into the lived experience of dementia

Benefits

Data on use and usefulness of the ENABLE devices

Results show a positive correlation between carer and persons with dementia’s

Legitimizes person’s feelings and experiences

Concludes…

Inclusion of people with dementia is a complex and challenging task. However, we know that when they are enabled to communicate, they have important things to say about services.

Concludes…

The task now is to build on early successes, encourage further learning and ensure that good practice is sustained and widely spread. Our findings suggest that effective inclusion requires action at multiple levels by individuals with dementia, care partners and friends; service organizations and providers; and funding organizations.

In addition, inclusion often leads to increased self-esteem and confidence for people with dementia. One person said: “It’s good to feel valued and to be a somebody, not a nobody”

(Chaston et al 2004).

May this be our mission today.