COVID blog #3: Restoring Connectedness during the COVID lockdown period in Italy

On February 24, 2020, the lockdown has started in Italy. Particularly, in the area of Rimini (Emilia Romagna region), very restrictive measures had been undertaken because it was one the highest risk areas. Markets, shops, schools and universities were all shut down. Also home care and semi-residential services providing support and assistance to people with dementia and elderly in general had been interrupted.

Moreover, Meeting centers, meeting places, Alzheimer cafes and other community services had been closed immediately while obliging all the participants to stay at home as they were considered a high risk group. This situation had been a shock for both participants and staff. Hence, to react to the isolation, the network partners started together looking for ways to restore connections and to continue with consultations, support and activities for both people with dementia and their caregivers.

The previous collaboration among the local memory clinics, the municipality and welfare agencies, and the local Alzheimer associations, built during the JPND MeetingDem project, allowed the professionals involved to meet timely (online). The new plans of action were developed by considering both the type of digital support the services’ staff could set up and the ones end-users have at their disposal. The main pillars for the new action plan were as follows:

• a proactive approach with users: they were contacted preliminary asking whether they would be interested in online activities as well as about the availability of digital devices;
• re-connecting with participants: staff members called (by phone) all those with whom they were in touch during the previous activities in order to re-establish a weekly routine for activities involving both people with dementia and their caregivers;
• supportive materials: activities and games were offered to both people with dementia and caregivers to assist? daily routines;
• digital technology: it allows people to meet together or, alternatively, to exchange messages and videos via a platform;
• organize online support meetings for caregivers led by a clinical psychologist.

On the 16^th of March, the staff members started this plan by contacting all those people previously participating and scheduling together the activities. The very first feedback from users was enthusiastic; they were all keen to take part. In particular, people with dementia expressed their joy to see again the staff members, they recognized them. Even though they were sad about missing opportunities to meet and work together, they very much appreciated that “the staff hadn’t forgotten them”.

A paramount instrument was the video calls which allowed them to see other people’s faces. This seemed much more impacting than only hearing their voices, even though the screens of the smartphone were less user friendly than screens of tablets or laptops.

Staff members now recognized the ability of people with dementia to adapt to the new approach. In some cases, they noticed that they were more active than in the previous face-to-face meetings. Staff also noted that in one-to-one chats, people with dementia were very focused, interested and more involved in the conversation than usual.

Through emails and websites, staff made several materials available for cognitive stimulation, physical exercises, music-therapy, dance and movements or other leisure activities. All of them were well tailored upon users’ needs, used in daily routine and appreciated.

One month after the starting of activities, around 492 services participants had been re-connected with their services’ staff through around 830 phone calls: 540 calls involved family caregivers, 216 involved people with dementia and 74 involved both of them; 164 video calls had been done, 76 with people with dementia, 5 with family caregivers and 83 with both of them; 50 multiple video calls involving 2 or more people with dementia took place; 11 online support groups for caregivers were organized. Finally, more than 232 videos had been posted in the group chats.

Going beyond these numbers, here some experiences of the participants are quoted (the reported names are not the real ones).

Paolo, a person with dementia, says: ““How beautiful your smile is, it doesn’t make us feel melancholic! You really succeeded in your goal, it seems that you are here near us, as before!”

Teresa, a family caregiver says: “Franco [caregivers’ loved one] likes video calls very much too. I can see it from how his eyes light up and he starts to speak, although sometimes he repeats the same things. When he saw Anna (a staff member) yesterday, he didn’t know which accomplished task to show her first. Then in the afternoon, he called Elena and he “flooded” her with words and explanations too”.

Franca, a family caregiver says: “I never would have imagined experiencing these emotions with my mom. I did not think she still had energy to spend in recreational activities. You have managed to bring out a world unknown to us relatives. Our gratitude is endless”

Valentina, another family caregiver, says: “dear staff, you cannot imagine how much you are helping us in these difficult days. I do not want to say that you did not do it before, but in these days you have entered our homes, in the environment where our loved ones feel safe, and now you are part of our family”.

The learned experience from this month of activities can be summarized as follows: People with dementia and caregivers adapt well to physical distancing but they experience a sense of belonging to a community or a group; social connectedness, using video call or phone call can be of huge support when it offers the opportunity to re-connect to (continue) a previous experience; family caregivers have a fundamental role and benefit from online resources; a motivated staff is fundamental, moreover they feel empowered being able to continue what it had been done previously.

The development, execution and evaluation of this new plan has been developed in collaboration with the following partners: Memory clinic staff-Local health agency of Rimini (AUSL- Romagna), Municipalities of Rimini and Province, Welfare agency in Rimini and province (ASP Valloni-Marecchia), the Local Alzheimer’s Association Rimini and the GRIPIDEM research group, Department of Psychology- University of Bologna.