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Dementia Care for Individuals with Cognitive Disabilities – Interview with Handbook Authors Heike Lubitz and Bettina Lindmeier

When forgetfulness becomes an illness, the affected individuals are not the only ones who suffer. Dementia is a challenge for the entire family and social circle – especially if the affected person has a cognitive disability. By these individuals, dementia-related memory, language, and orientation problems are often pronounced and may be accompanied by very challenging behavioral problems. It is estimated that around 15,000 people worldwide with cognitive disabilities are suffering from dementia. But studies assume that this number will triple in the next 20 years, and that institutions for residential care will face significant challenges. A practical handbook published in 2018 offers employees, residents, and other interested parties information and practical, day-to-day strategies for handling dementia in this population. The book was supported by the Software AG Foundation (SAGST) and is based on a doctoral dissertation by Heike Lubitz, which SAGST also supported. In this interview, Lubitz, who now holds a Ph.D. in special education, is joined by her Ph.D. advisor and co-editor Bettina Lindmeier. They not only speak about the relevance of practical handbooks and their personal motivation but also provide valuable tips about caring for dementia-affected individuals.

What was the personal motivation for your dissertation, and why was it important to you to turn it into a handbook?

Lubitz: The motivation was to create new paths in dementia care and also in the education-related work of professionals. Life with dementia should be a good one, both for the affected individual as well as for the important people in her life. This requires not only support and guidance through knowledge sharing, but also methods and communication forms that are tailored to the individual life situation. In addition, in my dissertation I wanted to explore how quality of life can be supported and maintained, how a change of residence and relationship termination can be avoided, and how all involved parties can be strengthened in how they handle the challenge of dementia.

How do the handbook and dissertation differ?

Lubiz: My dissertation had the goal to develop, implement, and evaluate educational concepts and support possibilities in residential institutions for dementia-affected individuals with and without disabilities. The basis for this was the burden experienced by professionals in this field. In addition, the goal was also to study – for the first time in a German-speaking country – the dementia-related effects on communal life in residential institutions. The particular focus of my work was to also include individuals with cognitive disabilities in the investigation. Their perspectives or experiences have been, up to now, missing from both research and training offers. My research results enable us to close this gap.

Lindmeier: And the handbook now offers a readable and easily implemented practical guide.

Who is the handbook intended to help?

Lubitz: The handbook shares practical management strategies and treatment methods for a positive approach to dementia. In it, individuals with cognitive disabilities speak for themselves. Their statements make clear the kinds of stresses that can result from dementia in living communities or working groups in day-to-day life, and shows how information and communication can relieve that stress within the group. Thus, the book is for all interested people who want to offer an educational group for individuals with cognitive disabilities – also in an inclusive setting.

Why are handbooks like yours so important, and what is the special merit of your book?

Lubitz: Handbooks like these combine research with the immediate lived reality of individuals. Research and the development of new concepts can improve pedagogical work and social togetherness, as well as our attitude when facing challenges.

Lindmeier: In addition to developing and testing a viable support concept for dementia care, the important merit of the book is that individuals with cognitive disabilities are for the first time allowed to discuss a complex, potentially frightening topic like dementia, can return to their living communities as multipliers and conflict mediators, and can enter into close dialogue with the team of caregivers.

Your handbook offers coping strategies for handling dementia. Which is the most important?

Lubitz: Increased knowledge and trust in new abilities leads to a new evaluation of the existing situation. Someone who knows little about the background or development quickly feels attacked, helpless, and angry. Knowledge sharing about dementia, mutual listening, and trying out care methods can prevent that dementia symptoms are seen as a provocation, and one often reacts with defensiveness or frustration. Empathy and value develop through understanding and adopting the other person’s perspective. That is why the most important coping strategy is a new definition of the situation: understanding what is happening, offering mutual support, and knowing what to do. That reduces the pressure in crisis moments.