When working in a museum project for people with dementia, it is important to have in mind the situation in which the project fits. Actually many institutions are involved (and may be involved) in a program of this type. Museum activities are effective and makes sense if integrated into a network of services and proposals. So we've tried to answer these key questions.
- Alzheimer’s: what is the current situation in MA&A countries?
- What about the "scene" in the area of museum and dementia?
- How can museums improve the quality of life of people who live with dementia?
1. Alzheimer’s: what is the current situation in MA&A countries?
The topic of dementia has arrived in the German society. It is present in the media on almost a daily basis. Apart from a few rural regions, especially in the eastern parts of Germany, there is a nationwide stationery, part-stationery, and outpatient care, as well as self-help groups for people with dementia. The majority of the federal states have developed their respective dementia strategies, and so did the federal government. On 1 January 2017, the Federal Government approved the “increased healthcare law” which provides a higher benefit claim for people with dementia, as well as a law to promote participation. Many initiatives develop specific support and cultural services, nevertheless the participation of people with dementia in social life continues to be severely restricted. There are currently no efforts to develop and carry out more inclusive and participatory programs.
Approximately 48,000 people live with dementia in Ireland, over half of whom have Alzheimer’s disease. That number is expected to rise to over 153,000 by 2046, according to a seminal study ‘The Prevalence of Dementia in Ireland’ by Suzanne Cahill and Maria Pierce. The majority (63%) of people with dementia live at home and there are an estimated 50,000dementia family carers in Ireland. In 2014, the Irish Government published the Irish National Dementia Strategy. This aims to increase awareness, ensure early diagnosis and intervention and develop enhanced community-based services, with an implementation programme set to run between 2014-2017 with focus on timely diagnosis of dementia and on the value of early intervention, along with the long-term objective of making people in Ireland generally more aware and understanding of the needs of people with dementia, and of the contributions that those with dementia continue to make to our society. Dementia Understand Together, a campaign to increase awareness of dementia, was launched in October 2016, as a public support, awareness and information campaign. It is led by the Health Service Executive working with The Alzheimer Society of Ireland and Genio and a coalition of over 30 partners from business, academic, health and voluntary and community sectors.
In Italy exists a National Dementia Plan (2015), defining strategies to promote appropriate diagnostic and therapeutic-care interventions: "There are areas with excellence alongside others where it’s absolutely necessary to operate to reach quality. Each Region has a different organization and there’s a quantitative and qualitative variability in the offer of diagnostic and treatment services. Often there’s a lack of integration and collaboration between the hospital, General Practitioner, community services and integrated home care, likely to result in a shortage in taking charge and continuity of care."
The PND recommends "the adoption of psychosocial therapies, targeted to improve the relationship with the patient"; and measures for “the enhancement of activities for caregivers organized by family members associations” – but there are no additional resources to hold them up.
Only in 2008 severe dementia was officially recognised by general practitioners as a special need. Lithuania doesn’t have dementia strategy. There is a significant lack of specific knowledge related to dementia in social, nursing, medical and home care sectors. While most of the services provided are public, the adequacy and accessibility of services for people living with dementia is limited with nearly no chances to participate in social activity. There are no psychological support mechanism or special provisions to support carers, with just a very few NGOs providing counselling services for people living with dementia and their carers.
2. What about the "scene" in the area of museum and dementia?
Many museums in Germany have specific offers for people with dementia. The range is varied, as most museums consider the experiences of other museums, but then develop their own programs. Networking on this topic is only rudimentary with the exception of the RuhrKunstMuseen in North Rhine-Westphalia. 11 art museums in that region are networking with each other and their social partners.
Furthermore, the Federal Association of Museum Educators (BVMP) provides a platform for cultural work with people over 66 years old, where dementia is one of its topics. It is striking that some of the museums that provide programs for people with do not state them in their museum websites. In addition, only some museums offer public tours for people with dementia.
Museums and galleries across Ireland are becoming increasingly aware of the need to establish dementia-friendly programming. The Azure Network is the largest network of museums and galleries focusing on dementia-friendly art programmes. It was originally initiated through collaboration between Age & Opportunity, The Alzheimer Society of Ireland, the Butler Gallery, Kilkenny, and IMMA (Irish Museum of Modern Art) in 2012. Inspired by the ‘Meet Me at MoMA’ project from New York’s Museum of Modern Art (MoMA), The Azure project aims to actively engage people with dementia in public galleries and other arts and cultural venues, thereby contributing to the removal of barriers to their greater participation within communities. In 2015, the Azure Network expanded to numerous arts venues nationwide including the founding organisations plus Arts & Disability Forum, Northern Ireland; Chester Beatty Library, Dublin; Crawford Art Gallery, Cork; DLR Lexicon, Dun Laoghaire Rathdown County Council Arts Office; Galway Art Centre, Galway; The Highlanes Gallery, Drogheda; The Hunt Museum, Limerick; the LAB, Dublin City Arts Office; The Luan Gallery, Athlone; The National Gallery of Art, Dublin, and West Cork Art Centre, Co. Cork. The network continues to meet twice annually and aims to further expand its reach in 2018.
Museum experiences dedicated to people living with dementia are quite recent in Italy. In 2010 the National Gallery of Modern Art in Rome was the first museum to institutionalize its proposal. Museums in Florence followed closely behind: Palazzo Strozzi (2011) and Marino Marini Museum (2012) were joined in 2014 by twelve more museums in Tuscany, thanks to a training course proposed by the Region department. Today Tuscany is the leading Region in Italy for museum projects dedicated to people living with Alzheimer's. Despite a growing interest, still the proposals in the museums are not so continuous and widespread throughout the country.
The cultural sector is notably starting to be more concerned with access programming and engaging with people from socially excluded groups. While there’s a significant shortage of service support and dementia friendly communities are not developed, people with dementia and their carers experience high levels of social isolation.
In 2014 and 2015 the very first training programme “Susitikime muziejuje”, dedicated to the museum educators and activity coordinators took place in two main cities of Lithuania. As a result a few museums launched special access programmes for people with dementia. However, the general panorama of museums is still lacking professional engagement with this particular audience.
3. How can museums improve the quality of life of people who live with dementia?
Participation in social life and experiencing "normality" is a great need of many people who live with dementia. In contrast to dementia-specific care programs, museums can offer this “normality” and thus can significantly contribute to the quality of life of people with dementia.
In the museum and during art receptions, dementia plays no role. Art is multi-layered and thus also gives possibility for discussions on a non-cognitive level, as well as it offers a space for communication which is based on perception. This kind of communication is independent of cognitive competencies and without any hierarchy. It enables an equally equitable encounter between people with and without dementia.
Museums can offer people living with dementia an opportunity to connect in the moment with visual art; an ideal topic of conversation for people with dementia and Alzheimer’s as participants need not rely on memory but rather consider what they are seeing in the present moment and how that makes them think and feel. Looking at art can be a transformative experience. Art can move us, prompt us to think or ask questions. Dementia-friendly museum programming gives people living with dementia and those close to them; a family member, friends or professional carer, the opportunity to visit the museum together, creating moments where, at least during the programme, people stop being ‘the person with dementia and their carer’ and go back to being husband and wife, mother and son, father and daughter, sister and brother.
In Italy there are still few opportunities for people living with dementia to participate in social and cultural life. It is very important to offer programmes that allow to express yourself freely, without judgment, enhancing the actual capabilities of people with dementia; activities offering to experience, together with family members or professional carers, new and more effective methods of communication. All museums, and especially art museums, could have an important role in that, since art proposes experiences involving different cognitive levels, including those less compromised by dementia.
Museums fulfilling their social position as public spaces where we define our shared collective identity, can help create a community capable of understanding and including dementia.
Museums can help to overcome social isolation by offering a way to participation in social life. The multi-sensory experience of programme “Susitikime muziejuje” showed that for people living with dementia and their family members a visit to a museum was an exceptional occasion to go out and escape from their regular routine. Activity in front of a piece of art provided an opportunity to engage in a meaningful conversation and had a positive impact on their well-being. People living with dementia described their experience as “positive”, “uplifting”, “interesting”, “being together”, “at my pace”. According to the participants, a visit to a museum should become a part of their regular life.