The main results of this project are the educational program and methodology that will be developed by the partnership:
1.Booklet – “Life in a story: Creative arts and storytelling use for Alzheimer Disease patients’ and carers’ support in UK, Greece, Romania, and Bulgaria”
This Output will bring together all the research, information and findings about the use of creative arts in dementia in the mentioned countries, and also knowledge about the use of creative arts and storytelling in social and health care (including here also other neurological/mental health issues/pathologizes).
This Booklet will integrate theory and practice in the partner countries, presenting not only research that can support the project further approach for designing the training program, but also examples of best practices of using arts and storytelling as means of Improving or solving social problems or medical conditions.
It will also provide basic information about Alzheimer dementia main characteristics and effects on the patients’ lives and also for the carers’ stress and burden, but also for professional carers and their possible burn out in the care process. The eBook will compare the perspectives of the 4 countries mentioned and will offer an overview of aspects identified.
The conclusions will approach the idea of using this medium for the dementia support, having as background the previous chapters and analysis. This will provide us an integrated perspective of this field of intervention in the 4 countries and future steps that can be envisaged for the support of persons diagnosed with dementia and their carers – formal and informal.
The product will be written in English and then translated in all partner languages.
2. Training programme using theatre and storytelling, targeting health and social care professionals for a better support for older people with Alzheimer DiseaseA
The training program is aiming at building necessary skills in care staff in order to deal with complex care needs of Alzheimer patients and to support them for having a better quality of life and to keep their functionality a longer time, along with a sense of their identity and creativity flow. As theater and storytelling are a mean for expressing themselves, patients with Alzheimer will be able to better preserve their cognitive functions, to allow emotions to express in a therapeutic way and to ease the agitation/anxiety feelings due to memory loss.
Care staff in residential or day care facilities in Romania, Greece, Bulgaria and UK will learn how to use a theatre and storytelling-based methodology for working with AD patients. The training program will be then piloted in Romania, UK, Greece, Bulgaria, on 20 health/social carers from residential or day care institutions, who are working with dementia pathology, and on 12-15 patients with AD. Each country will then elaborate a Report from the piloting of the training program in each country, outlining participants’ experience.
A final piloting report will be delivered, by Habilitas. The training program will include 4 workshops: 2 will be focused on creative drama use with persons with dementia, and 2 will focus on storytelling use. A Handbook will also be delivered. A Train of Trainers will be held in Dublin, Ireland, by GSA (responsible for the output) with participants (trainers) from each country.
3. Toolkit for family carers – Improving communication between family carers and persons diagnosed with dementia, through role-play and storytelling
At the moment there is a great deficit regarding social services specifically aimed at patients with Alzheimer’s disease. Dementia impairs the behavioural and communicational abilities of persons with dementia and interferes with social and occupational functioning. Family carers and professionals lack the knowledge and skills to appropriately interact with and support patients with Alzheimer’s disease, who are often disoriented in time, place and person, and exhibit behaviours that need to be understood.
This lack of information and skills represents the main causal factor for the carers` burden, leading to depression, anxiety, irritability and social isolation, especially for family carers, who often are facing alone this challenge of care, combined with the sadness and suffering of witnessing the progressive and irreversible deterioration of the loved one.
The toolkit will contain:
- Introduction on the Alzheimer dementia challenge
- Chapter on information regarding problematic behaviors in this pathology
- Chapter on information on handling problematic behaviors in this pathology
- Chapter on expert opinion on the behaviors in question
- Chapter on alternative ways of communication with the person with dementia
- Case studies with concrete examples of using role plays, storytelling, other communication ways with the persons with dementia
Access to informative resources in an online form and as a guide will contribute to a more effective approach to problematic behaviors, reducing stress, and implicitly increasing the quality of life of people affected by neurocognitive diseases and their carers. The themes approached in this toolkit are as follows: hallucinations, delusional ideas, repetitive behaviors, repetitive questions, “sunset syndrome”, refusal of medication, refusal to wash, wandering. Each of it will be subject to a distinctive chapter, and will be described in behavioral terms, and will be assigned a role-play in order to tackle it. Storytelling and role-play will be subject to a separate chapter and will be presented modalities to use it for the aim of reducing the behavioral symptoms in dementia., along with minimum 3 case studies. Also, other instruments will be suggested and presented in this toolkit, which can ease communication with a person with dementia (mediums such as using photos or images, music, film etc.).
4. Policy recommendation for creating dementia-friendly communities/institutions in terms of raising awareness and integrating tools as creative arts in the care of persons with AD
It will summarize the project findings and results, and will give action directions for the future, in creating dementia-friendly communities/ institutions. It will present principles upon to adapt activities, environment and raise awareness for dementia in communities and in care facilities for older people diagnosed with Alzheimer dementia.
The need to physically and socially prepare our communities for an older population, and to understand issues affecting the elderly, has never been greater. Communities that make moves toward embracing our demographic shift will have a significant advantage over other areas and stand to gain not only from greater social cohesion but also economically. The development of dementia-friendly communities will dramatically improve the quality of life for people living with dementia, as well as their carers, family, friends and broader support networks by helping to break down the stigma often associated with the condition. And the very act of creating dementia-friendly communities is a process of engagement: people with dementia should be at the Centre of all planning, consultation and activities.
However, dementia-friendly communities can also offer benefits to the wider population. The promotion of social cohesion and understanding the needs of others helps make these communities generally great places to live, aiding in their growth and prosperity. Flow-on benefits to businesses that promote themselves as more accessible to people with dementia and other cognitive impairments are likely to be realized as more people – especially the elderly – see these as welcoming places to visit and shop. As many areas seek the tourism potential of the growing ‘older affluent’ travel market, those towns able to promote themselves as easy to navigate, dementia-friendly, and genuinely welcoming communities will have a major advantage in attracting older visitors over places that do not meet these criteria. While the major benefits of dementia-friendly communities are social and quantifiable in the positive feedback given by people with dementia, their carers and community participants who have seen the improvements, there are also very tangible economic benefits.
The structure of the document will follow the domains defined by Alzheimer’s Disease International (ADI), within the constructs of WHO’s Age Friendly Cities principles and tactics, are as follows:
- Public awareness and information access
- Planning processes
- The physical environment
- Access and consideration for dementia among local businesses and public services
- Community-based innovation services through local action
- Access to transportation