Fondazione Manuli: Caring for Those Who Care

Cristina Manuli: Families are often very stressed when assisting relatives with dementia. But it's important that they don't become isolated from society and have time to relax, to go to the cinema, to do something other than caring. Our volunteers let them do that by offering support at home or by phone.

Basically, our volunteers try to help dementia sufferers lead a normal life. They take them for walks, read with them, listen to music - they do activities they did before they had dementia. It's very important to constantly remind them of their previous life. We also offer occupational therapy as a way to save the capacities people lose in dementia. In some more severe cases we have specialists that can deal with things like toileting and bathing.

Manuli: The demand has increased during the last years. We have expanded the number of volunteers and other partners. In particular, we have expanded the support for families by offering them training to better understand the illness.

In the early 1990s there was not much awareness of and sensitivity to dementia. That sensitivity has increased in recent years, but still families come to us because they need information, which is scarce.

Every day people call our helpline or come to our office looking for advice on how to care for people with dementia. The biggest problem they have is the isolation they feel because of the lack of information.

Manuli: In January 2007 we started a project in Milan called ‘Alzheimer's Café', inspired by an idea born in Holland in 1997. Every Friday we meet with families and dementia sufferers at the Casa Milano, the town hall, where there is a garden, a library and musical instruments available.

There are two separate sets of activities: one set for families to give them information from psychologists and doctors; another set for people with dementia, occupational therapies like painting, music and playing games. At the end, everyone meets up for a special gathering with music, like a small party. This all helps families break the isolation they suffer following the onset of the illness.

Manuli: We don't receive support from government or other institutions. And we don't charge families for our services. We get our money through companies, private banks, and fundraising events.

Over time we hope to fix an agreement with the government to help us give assistance. These ‘assistance agreements' already exist for people with cancer. We hope to have something similar for dementia.

Manuli: There are no good systems to help families yet. Normally families need private assistance. They need help from foreign badanti (care workers) and have to pay for that assistance. There are a lot of badanti in Milan. There is special office at Casa Milan to bring together families and badanti. They are very important. If they would have to leave Italy one day, it would be a disaster.

 
Interview by Pedro Marchetti

 
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