Dementia Friendly communities are now a reality in the UK, but the idea is spreading fast around Europe too. In 2016, this small town near Milan started a journey which made it the first official Italian dementia friendly community.
“When you hear your GP saying ‘Dementia’ it’s overwhelming.” remembers Andrea, who dealt with the same diagnosis for both his mum and his father-in-law. “Our GP said right away that there would have been challenges along the way”. Little did he know that when the community comes together, the dementia journey can be much easier.
The diagnosis of dementia will inevitably cause strong emotions, disbelief, anger and fear of the unknown. Just like Andrea, Paola had to deal with her dad’s decline from the onset. “Dad changed rapidly and his memory deteriorated drastically within few months, to the point that he didn’t recognise his family”.
Andrea and Paola are not isolated cases, in Italy and in the world. Gabriella Salvini Porro, president of Federazione Alzheimer Italia quotes:
“In Italy alone, there are 1.2 million people living with dementia, 50 million in the world. But dementia affects everyone around the person with the diagnosis.”
They are astonishing figures, which, unfortunately are due to increase, in an ageing population.
It’s difficult to identify the signs of the illness, and identifying it as early as possible can make a big difference. Fondazione Golgi Cenci in Abbiategrasso (Milan) is one of the most important research centres in Italy for Alzheimer and dementia related studies. Its director, Dr. Antonio Guaita, explains: “Alzheimer and dementia are not just about memory loss. There are many factors such as mood swings or mild cognitive impairment which can result in an early diagnosis.”
Although there is currently no cure for Alzheimer’s and dementia, there are many interventions which can have a positive effect on people affected by the illness.
Salvini Porro remembers:
“In 2015 I started thinking that we could do a lot more for people with dementia, to live well with dementia”
A couple of years ago in UK, the first ‘dementia friendly communities’ were born and Salvini Porro knew that replicating that model in Italy would have been a good start, with Abbiategrasso being the ideal location. Salvini Porro explains further:
“This was an informed choice. Federazione Alzheimer Italia had already started working with Fondazione Golgi Cenci on a project regarding the ageing of the brain. Abbiategrasso, with its 32.500 inhabitants has always had a strong sense of community, with many charitable initiatives aimed at improving the lives of the town’s citizens.”
The determination of Salvini Porro and the immediate undertaking from the city council, prompted the involvement of the local Health and Social Care institutions and local private partners.
Soon Abbiategrasso had become the blueprint for an Italian dementia friendly community, paving the way for other 15 town across Italy who followed suit. (24 at the moment of writing this blog – Ed.)
Mario Possenti, General Secretary of Federazione Alzheimer Italia expands: “Abbiategrasso and the other 15 towns have only just started and they’re a work in progress. As their mantra suggests, ‘Working to become a dementia friendly community’ is an ongoing commitment from both local institutions and citizens.
“How can we transform our city to make it inclusive for people affected by dementia?”
Laura Pettinato, Fondazione Golgi Cenci psychologist, explains that this was one of the questions the multi disciplinary team involved in the project had to answer. “We pulled together a series of questionnaires and carried out interviews with over 20 people living with dementia and their families. The outcomes of these questionnaires informed the training and learning courses and shaped the project from the start.
The involvement of the person living with dementia is pivotal Salvini Porro explains:
“We’re noticing a shift worldwide, where it is the person with dementia to be at the centre of the service, not the illness. It’s not simply a technical shift, but a cultural one, which allows the end users to inform and direct our service provision.”
Two of the main findings from working with the families involved in the project were feeling secure while being out and about and maintaining an independent life. These translated in allowing families to keep up their weekly visits to the town market, core of the town’s social life, and having a supportive, friendly network in the community.
The first most obvious partners to create this network were the local Police and the local businesses, who got involved and attended the training and learning courses. The learning sessions focused on understanding the illness not only as a medical condition, but also from a human perspective, explaining behavioural differences and how to relate to them.
Francesca Arosio, Federazione Alzheimer Italia’s psychologist, explains that the learning sessions were giving very practical advices, for example around communication. Formulating concise sentences, maintaining eye contact, voicing one request at the time are all things we might take for granted but can make a huge difference in reducing anxiety in a person with dementia.
Simone Leo, the local police Deputy Commander confirms:
“We understood the way we should relate to a person with dementia and we already put our learning into practice on 2 separate occasions.”
Tiziana Losa, owner of a local boutique and president of the Local Business Association remembers well the learning sessions: “People with dementia have always been independent, even during the initial stages of the illness and the local businesses are a recognisable point of reference. It’s important that we keep being that point of reference and that we know how to relate to them, even after their diagnosis. Consuelo Santoro, owner of a flower shop reaffirms:
“It’s important being present for the person living with dementia, but it’s also important for their family to feel reassured. We [business owners] are here for them, even just for a chat or to make them feel safe and secure.”
Fondazione Golgi Cenci and Federazione Alzheimer Italia didn’t just stop at training the local community. With the local association Ate-Ascra they started gym courses for people affected by dementia and with the local library they created a whole section for resources specific to the subject. Federazione Golgi Cenci have now courses for both families and healthcare professionals who can receive practical advice from a cohort of medics, psychologists, lawyers, occupational therapists, dentists etc. Andrea explains: “During these courses I’ve learned a lot not only from the professionals, but from sharing experiences with other families. I can’t say that it’s easy, but I’m well prepared. Before [the courses] I was apprehensive when visiting my parents. Now I am confident, if there’s a problem, I know how to deal with it.”
Another service offered by Fondazione Golgi Cenci and Federazione Alzheimer Italia is ‘Pronto Alzheimer’ (‘Hello Alzheimer’) a phone line available once a week to give advice and moral support to those affected by dementia. Paola, phoned them a few times:
“They are people who are there to help. There’s only so much strength you have and sometimes some moral support goes a long way.”
Abbiategrasso’s journey, started in 2016 is a great story of a community who came together to improve the lives of all those affected by dementia. It is a journey that has only just started and evolves daily, but it’s already making a huge difference to the town’s citizens. Abbiategrasso is the living proof that a service with citizens at its core and the community at its heart, will most certainly have a huge social impact for the better.