In 2019, there were an estimated 58 million people with dementia worldwide, and that number is expected to soar to 153 million by 2050. There are currently about 7,500 people with dementia. However, that number is expected to rise to around 13,000 by 2050, making her 3.3% of Malta’s total population.
Dementia is the seventh leading cause of death and one of the leading causes of disability in the elderly, but there has been debate as to whether dementia can be considered a disability.
According to the World Health Organization (WHO), disability is the result of interactions between health conditions and personal and environmental factors, including challenges related to the physical environment, negative attitudes and other social challenges. All these factors can prevent a person from leading an independent daily life and from participating actively in society.
Although less prominent than other conditions when it comes to dementia, cognitive impairment has a significant impact on the ability to remain functionally independent. However, like other disorders, dementia poses societal challenges beyond the medical condition.
Over the past two decades, attempts have been made to view dementia and its associated symptoms as a complex interplay between pathological, personal, social, attitudinal and environmental factors. For example, agitation, a common neuropathological symptom of dementia, may be the result of fear experienced by people with dementia in unfamiliar surroundings. her caregiver.
The biopsychosocial model enables a more humane approach to dementia care and provides a body of knowledge to better support people with dementia and their caregivers using person-centred non-pharmacological interventions. contributed to the development of Nevertheless, much needs to be done to ensure that these interventions are integrated into routine care. Furthermore, as seen in the social disability model, there is still too much emphasis on the medicalization of dementia at the expense of social aspects that can result in ‘over-disability’ for those living with this condition. .
Unlike the social disability movement, which has ensured awareness of the social and environmental dimensions that lead to disability, dementia activism has only recently begun in international fora.
Recognizing dementia as a disability ensures that the rights of people with dementia are protected under the UN Convention on the Rights of Persons with Disabilities.
International organizations such as Alzheimer Europe (affiliated with 41 national Alzheimer’s associations in 37 European countries) have successfully launched working groups made up exclusively of people with dementia (not family caregivers). organization.
Unfortunately, active participation in national policies relating to the needs of people with dementia is still very difficult in the Maltese Islands. This may be partly due to our small size (low number of dementia patients we can actively contribute to). However, it may be due to the fact that health and social care professionals, as well as policy makers, generally take patriarchal positions and incorrectly assume that people with dementia cannot participate. In line with the common slogan ‘we are nothing, without us nothing’, people living with dementia in the Maltese Islands are empowered to make their voices heard. need to be asked.
Reframing ‘dementia’ as a ‘disability’ may help move away from the biomedical model, which is still the dominant model in our health and social care services. It also helps reduce the paternalism associated with illness care services. This shift in perspective also serves as a catalyst for people with dementia and their caregivers to become active agents, voice their concerns, and ensure that their human and legal rights are recognized.
On a practical level, recognizing dementia as a disability ensures that the rights of people with dementia are protected under the UN Convention on the Rights of Persons with Disabilities.
At mild and intermediate stages of symptoms, people with dementia should have full access to rehabilitation and community services for people with disabilities. This ensures that they remain as independent as possible and integrated into the communities in which they live. quality of life should be ensured through appropriate use of services that maintain
Much needs to be done in the Maltese Islands to reframe dementia as a disability. Provide further dementia care training to medical and social care professionals to understand the links between dementia and disability and to avoid “therapeutic nihilism” (the belief that people with dementia cannot be rehabilitated). is needed.
Finally, at the policy level, policy makers should ensure that people with dementia, their family caregivers, and representative bodies are actively consulted and involved when new services are developed or new policies are formulated. should be done.
Anthony Scerri is Senior Lecturer in the Department of Nursing, Faculty of Health Sciences, University of Malta. He is Vice-President of the Malta Dementia Association (MDS) and Vice-President of the Maltese Association of Gerontology and Geriatrics (MAGG).
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