Dementia in times of lockdown

Amnesia Zug has been accompanying dementia patients in their daily lives since 2016, and their service is more necessary than ever at the moment.

Life has changed for everyone since the beginning of the Corona crisis. The most vulnerable people have had to submit to severe restrictions. But what if a vulnerable person doesn't understand what it all means, or simply forgets that they shouldn't go out for shopping or walking? This is exactly what has happened in recent months in the canton of Zug to an estimated 1,600 people suffering from dementia. Their relatives also suffered with them, and were only able to use very few outpatient care services for the dementia-stricken family members after the federal government declared the measures taken during the peak of the Corona pandemic.

During this difficult and uncertain time, the five women from Amnesia Zug, a project of the Alzheimer Zug, provided a contact and counselling centre with advice and assistance. "Children whose parents were normally cared for five days a week in a day care centre had to take care of their demented parents around the clock after the centres were closed, in addition to working full-time work in home office. Relatives who were in this situation were able to consult us to obtain information about relief options," explains Amnesia Zug co-project manager Daniela Bigler Billeter. This resulted in 12 new registrations in both March and April - which is a high number, as otherwise there are only about 80 new registrations per year.

Working in compliance with the hygiene regulations and in consultation with the relatives during home visits or consultations in their own premises in Zug, the specialist team was able to make the necessary declaration of needs and provide meaningful support during the Corona period. The consultants are thereby the first and a neutral contact person for those affected and their families. "Our members feel very relieved when the many telephone calls, clarifications, registrations and coordinations are handled for them," says Bigler Billeter.

Solutions tailored to each individual
Amnesia Zug is a pilot project that, since 2016, has been helping people to identify dementia at an early stage, in order to provide early access to care. "Some of those affected only call us for a non-binding conversation, which already helps them," says Bigler Billeter. For others, home visits are made for an initial analysis of the situation, in order to develop the appropriate support concept afterwards. "We are a coordination centre for investigations and solutions tailored to each person concerned," explains the co-project manager. 116 people in the canton of Zug are currently assisted in this way.

Agnes Leukens, Irene Teismann, Patrizia Holzer, Daniela Bigler Billeter and Ulrike Darsow (from left to right) of Amnesia Zug had lots to do in the high phase of the Corona pandemic. The Alzheimer Zug project has reported many new registrations.

The individual situations are considered in an interdisciplinary way, and are discussed at the regular helper conferences with partner organisations, such as Alzheimer Zug, Spitex Zug, the Swiss Red Cross of the Canton of Zug, Tagesheim Baar or Pro Senectute Zug. "Even after finding successful solutions for the patients, we remain in contact with the affected persons, and repeatedly check whether the solution is working well, or whether it needs additions or other relief options," says Bigler Billeter. This close-knit support could delay the need to move into a care home. "We and the relatives strive to keep the sick persons in their familiar environment for as long as possible," says Ulrike Darsow, also a co-project manager at Amnesia Zug.

The project phase will become a permanent offer
The idea for the project was born in 2014 by the Zug family doctor Hansruedi Kühn and Olle Larsson, the founder of Medela, a Swiss medical technology company. Larsson expressed his intention to underline his attachment to the people of Zug with a "publicly accessible work for the general public". "This work should be located in the healthcare sector and its build-up should be financially supported with funds from the Family Foundation (Familienstiftung)," continues Bigler Billeter. In looking for gaps in health care provision in Zug, Kühn came across the problem of the increasing number of dementia sufferers, and their early detection and adequate support and assistance. "There were counselling services for demented people, but no offer that can accompany and support these people intensively over a long period of time," explains Bigler Billeter. Alzheimer Zug welcomed the idea very positively.

A concept for this was developed in 2015. On the basis of this concept, the Larsson-Rosenquist Foundation secured the start-up funding for a five-year project phase, with the express aim of transferring it to permanent care. The transfer of the offer to a permanent service for the population of the canton of Zug is to take place from January 2021: "A decision by the Commission regarding long-term care is expected towards the middle of the year."