Prioritising dignity in dementia

Dementia is an increasingly pressing concern in Malta, affecting thousands of individuals, their families and the professionals dedicated to their care. By 2030, approximately 10,000 people over the age of 60 in Malta are projected to be living with dementia, representing 2.3% of the population.

While early-onset dementia is becoming more commonly diagnosed, the condition affects individuals of all ages.

Research identifies 14 modifiable risk factors for dementia, such as physical inactivity, poor education and midlife hearing loss, highlighting the importance of preventive strategies in reducing its prevalence.

Last year, the Malta Dementia Society (MDS) marked its 20th anniversary, continuing its legacy as a beacon for those impacted by dementia. Central to this work is the Malta Dementia Working Group, which provides a platform for individuals living with dementia and their loved ones to share their experiences.

As a psychotherapist on the team, I have witnessed the transformative impact of these sessions. Our approach is grounded in listening, understanding and adapting to the realities of dementia, embracing the principles of person-centred care.

This commitment to person-centred care has served to illuminate both Malta’s progress and the significant gaps that remain. While goodwill is evident among state and private care providers, systemic issues continue to hinder urgently needed reforms. Chief among these challenges is the lack of training and regulation for carers – a shortfall that undermines the quality and dignity of care being delivered.

Regularising carers

Care workers form the backbone of support for individuals with dementia. They ensure daily needs are met, provide safety and often become close companions to those they care for.

However, in Malta, care workers are not yet subject to standardised training or professional regulation. This gap has created disparities in the quality of care, leaving families feeling unsupported and individuals with dementia at risk of inconsistent treatment.

In 2018, Malta launched a public consultation on a proposed bill to regulate the care sector, including mandatory registration and training for care workers. While this initiative was a positive step, progress has stalled and the absence of a regulatory framework persists. Establishing a regularising body is crucial – not as a punitive measure but as a means to empower care workers with the knowledge, tools and standards needed to provide compassionate, professional support.

Through the Malta Dementia Working Group, we have heard countless stories that underscore the urgency of this issue. Families describe carers who, despite their dedication, lack the training to address the specific needs of individuals with dementia.

Care workers themselves express frustration at the lack of professional development opportunities. A framework for mandatory training, paired with ethical guidelines, would uplift carers and ensure consistent, high-quality care for those who rely on it most.

Systemic barriers

The challenges faced by individuals with dementia extend beyond caregiving. Participants in the Malta Dementia Working Group have shared their struggles with poor infrastructure, inaccessible public spaces and unreliable public transport. These systemic barriers exacerbate feelings of isolation and hinder independence. Revamping the concept of dementia-friendly communities in Malta – an initiative that has yet to take off – could address these challenges more effectively.

Stigma remains another pervasive obstacle. Individuals with dementia may hesitate to speak openly, fearing discrimination and judgement.

Unfortunately, stigma and discrimination towards persons with dementia remain significant global concerns, as highlighted in the World Alzheimer Report 2024. Addressing stigma through education and awareness campaigns is essential for creating a credibly inclusive society.

Our approach is grounded in listening, understanding and adapting- Peter Farrugia

Informal caregivers, such as family members who provide most of the care, also face significant challenges. Many feel overwhelmed and underprepared, in need of accessible training, more robust respite services and emotional support to sustain their efforts.

A comprehensive approach to dementia care must include strong support systems for informal caregivers, recognising their indispensable role in the care network.

Person-centred care

The MDS’s work is underpinned by the belief that individuals with dementia must be at the centre of every solution. In our psychotherapeutic sessions, we prioritise creative and non-verbal modes of communication to ensure that every individual has a means to express themselves. These methods not only honour the personhood of those with dementia but also offer valuable insights into their lived experiences.

The MDS collaborates closely with care providers, working to enhance the quality of care through shared expertise and advocacy. National initiatives like the establishment of the Older Persons Standards Authority represent important progress, offering a framework to monitor and improve care standards.

However, more must be done to ensure these standards are effectively implemented and tailored to the unique needs of individuals with dementia.

Shared responsibility

Improving dementia care in Malta requires collaboration among key stakeholders: individuals with dementia, family members, health and social care professionals, policymakers and the public.

Regularising care workers, enhancing public infrastructure and addressing stigma are crucial steps toward a more inclusive society.

In addition, providing free and accessible care services to support families while their loved ones live at home should be prioritised. Packed waiting lists and minimal service provision, such as one hour per week of support, are insufficient.

The MDS continues to advocate for dementia-friendly spaces and national visibility, combined with greater cooperation from local councils to catalyse these efforts.

The MDS would also be happy to hold a meeting with the parliamentary secretary to discuss these points in greater detail and explore practical next steps for advancing dementia care in Malta.

As one participant in the Malta Dementia Working Group remarked: “Dementia doesn’t take away who you are – it just asks the world to see you differently.”

By listening to these voices and working together, we can build a Maltese society that not only meets the needs of this growing community but celebrates our shared dignity, resilience and humanity.

Peter Farrugia is a psychotherapist and researcher, working with the Psychotherapy Team of the Malta Dementia Society.

For more information contact info@maltadementiasociety.org.mt