It was estimated that there were around 58 million persons living with dementia in 2019, globally, with the number expected to increase exponentially to 153 million by the year 2050. Locally, there are currently around 7,500 persons living with dementia. However, the number is expected to rise to around 13,000 by 2050, which is equivalent to 3.3 per cent of the total Maltese population.
Although dementia is the seventh major cause of mortality and one of the leading causes of disability in old age, there has been debate whether dementia can be considered a disability.
According to the World Health Organisation (WHO), disability is the result of the interaction between the health condition and the personal and environmental factors, which include challenges associated with the physical environment, negative attitudes and other social challenges. All these factors can prevent the person from carrying out activities of daily living independently, as well as participate actively in society.
With respect to dementia, although they are less visible than in other conditions, cognitive impairments significantly influence the person’s ability to remain functionally independent. However, like other disabilities, dementia poses social challenges that go beyond the medical condition.
During the last two decades, there has been an attempt to see dementia and its associated symptoms as a complex interplay between the pathological, personal, societal, attitudinal and environmental factors. For example, agitation, which is a common neuropathological symptom in dementia, could be a resultant of the fear experienced by a person living with dementia who finds himself/herself in unfamiliar surroundings or due to inappropriate interaction between the person living with dementia and his/her caregiver.
The biopsychosocial model has enabled a more humanistic approach to dementia care and contributed to the development of a body of know-ledge to better support persons living with dementia and their caregivers using person-centred, non-pharmacological interventions. Nevertheless, much needs to be done to ensure that these interventions are integrated in daily care. Moreover, there is still too much emphasis on the medicalisation of dementia, at the expense of the social aspects that, as seen in the social disability model, can result in ‘excess disability’ of the person living with this condition.
Unlike the social disability movement, which ensured the recognition of the social and environmental aspects that lead to disability, dementia activism has only recently started in the international fora.
Recognising dementia as a disability would ensure that the rights of the persons with dementia are protected under the United Nations Convention on the Rights of Persons with Disabilities
International organisations such as Alzheimer Europe (an umbrella organisation of 41 national Alzheimer’s associations from 37 European countries) has successfully launched a working group composed entirely of persons living with dementia (not of family carers) that are actively involved in setting up the agenda of the organisation.
Unfortunately, in the Maltese islands, the active participation of persons living with dementia in national policies that relate to their needs is still very challenging. This could be in part due to our small size (fewer number of persons living with dementia who could actively contribute). However, it could be due to the fact that health and social healthcare professionals, as well as policymakers, generally take a paternalistic stance and wrongly assume that persons with dementia are unable to participate. In line with the common slogan, ‘Nothing about us, without us’, persons living with dementia in the Maltese islands need to be empowered and their views heard more.
Reframing ‘dementia’ as a ‘disability’ may help in moving away from the biomedical models which is still the dominant model in our health and social care services. This will also help to reduce paternalism associated with dementia care services. Such change in perspective will also help to act as a catalyst for persons living with dementia and their caregivers to become active agents, voice their concerns, and ensure that their human and legal rights are acknowledged.
On a practical level, recognising dementia as a disability would ensure that the rights of the persons with dementia are protected under the United Nations Convention on the Rights of Persons with Disabilities.
At a mild and middle stage of the condition, persons with dementia should have full access to rehabilitation services and community services for persons with disability. This would ensure that they remain as independent as possible and integrated in the community where they live. As the condition progresses, a rights-based approach should ensure that the quality of life is maintained, through the appropriate engagement of services that maintain their dignity, respect, stimulation and comfort.
Much needs to be done in the Maltese islands to reframe dementia as a disability. Further dementia-care training needs to be provided to health and social care professionals to understand the link between dementia and disability, and avoid ‘therapeutic nihilism’ (the belief that persons with dementia cannot be rehabilitated).
Finally, at a policy level, policymakers need to ensure that the persons with dementia, their family caregivers and representative associations are actively consulted and involved when new services are developed or new policies are written.
Anthony Scerri is a senior lecturer at the Department of Nursing, Faculty of Health Sciences, University of Malta; vice-chair of the Malta Dementia Society (MDS) and vice-president of the Maltese Association of Gerontology and Geriatrics (MAGG).