On World Alzheimer’s Day, the Ombudswoman, Dr Simona Drenik Bavdek, emphasises that people with dementia must be guaranteed appropriate health and social care, respect for their dignity and personal freedom, and the opportunity to participate in decisions that affect their lives.

“A diagnosis of dementia does not deprive a person of their rights. Whether they will be able to exercise these rights even when they need more support and care due to their illness depends on the quality of our system,” emphasises the Ombudsman.

The Human Rights Ombudsman (HR Ombudsman) has long been drawing attention to the lack of appropriate programmes and residential facilities, staffing issues and insufficient coordination between the health and social care systems. Long waiting times and difficulties in securing care following discharge from hospital can leave people with dementia and their loved ones without an adequate solution. The Ombudsman also draws particular attention to the situation of family members, who, in the absence of services, take on a large share of the care burden.

“We cannot expect relatives to use their own time, health and financial resources to fill the gaps in the system. The state must ensure accessible and timely assistance for people with dementia and appropriate support for their loved ones,” emphasises Dr Drenik Bavdek.

The HR Ombudsman also monitors the situation of people with dementia as part of the National Preventive Mechanism, which visits care homes and hospitals to assess the treatment of people deprived of their liberty. In the case of people with dementia, it is particularly important that any restrictions on their freedom are lawful, necessary and proportionate.

The Ombudswoman also highlights the need for greater involvement of people with dementia in decisions that affect them. The condition may affect their decision-making capacity, but this must not lead to their automatic exclusion. In this regard, the Human Rights Ombudsman has for several years been drawing attention to the need for the proper implementation of the Convention on the Rights of Persons with Disabilities, as the linking of certain rights to a formally recognised status of disability can make it difficult for people with dementia to access them. Among the specific difficulties highlighted was the process of obtaining a parking permit.

“We must ask a person with dementia what they want and make an effort to understand their response. When they need help with decision-making, we must provide support that preserves their autonomy and dignity to the greatest extent possible,” emphasises the Ombudswoman.

The HR Ombudsman has been involved in raising awareness about dementia for many years. In 2017, its headquarters became the first dementia-friendly location in Slovenia, and the network now comprises more than 500 locations. In April this year, the Ombudswoman met with the Slovenian Association for Dementia Support, Spominčica, and highlighted systemic problems in the care of people with dementia. In August this year, representatives of the Ombudsman’s institution also visited the ‘Path of Memory’ at the Volčji Potok Arboretum, which is designed for people with memory problems or signs of dementia and their loved ones.

On World Alzheimer’s Day, the Ombudswoman, Dr Drenik Bavdek, calls on the relevant authorities to further develop appropriate forms of care, ensure sufficient and qualified staff, improve cooperation between the health and social care systems, and provide more effective support for family carers. When planning measures, the relevant authorities must take the actual needs of people with dementia as their starting point and enable them to participate in shaping solutions that affect their lives.