On 3 April, the Swedish Dementia Association (Demensförbundet), together with several partners, organised the "Gathering of strength for younger people with dementia" day. The purpose of the meeting was to gather the experience and knowledge that already exist and understand how the Swedish Government's new dementia strategy will lead to concrete measures that make a difference for everyone living with the condition. The meeting started with a panel discussion with Kjell Ehn (pictured, right), who is Sweden's representative in the European Working Group of People with Dementia; it also included researchers, nurses, relatives, lawyers and the Minister for the Elderly/Minister of Social Insurance Anna Bergkvist Tenje (pictured, left). The panel discussion highlighted several areas that need improvement, not only regarding care and welfare, but also identity and the opportunity to continue living a meaningful life. What emerged during the panel discussion and during the roundtable discussions that followed is specific to younger people with dementia, but much of it also applies to everyone, regardless of age.
Examples of improvement suggestions:
• Introducing a starter package at diagnosis containing information, coaching contact, legal advice and contact person.
• Offering continuous psychosocial support not just in times of crisis.
• Introducing pilot or case manager functions to coordinate care and support.
• Building care relationships on trust and accessibility, creating space for spontaneity in conversations
• Restructuring care structures around need as well as age (information and activities should be accessible and relevant for different ages).
• Strengthening the possibility of maintaining identity and role, for example through adapted activities and supporting working life.
• Offering forms of accommodation for young people with dementia that are based on normal needs for their age.
• Developing support for relatives, especially for young people, both emotional, practical and social.
• Clarifying the child perspective in routines, care planning and collaboration.
• Connecting school health care to children and young people as relatives.
All in all, it was a particularly good and important day, where Kjell Ehn’s experiences and views made a great impression on everyone, not least on the Minister.
