Creating room for anticipatory grief

Abstract

Dementia is a part of our society. One in five people, and for women even one in three, will develop dementia. Dementia has a significant impact on the lives of those affected, as well as their loved ones. This design project focuses on the impact of dementia on the adult children of a parent with Alzheimer's disease.

Once a parent is diagnosed with dementia, a complex situation occurs that forces the adult child to adapt to - and cope with - this new situation. A situation in which three processes can be distinguished: dementia and its effects, the social connection(s) between them or others and the grieving processes. These three processes create a complex reality as each of them are unpredictable, unique to the individual, and influences and intertwines with the other processes. To understand and to design for this complex world; several research and design activities have been conducted to map this context that the child and parent with dementia are in. These activities aimed at involving the perspective and experience of both experience and dementia experts.

Due to Alzheimer's, the brain cells of the parent are damaged, affecting their behavior, thinking, and emotions. There are three stages, in which the parent first mentally and later physically deteriorates. The dementia in the parent's brain brings many changes and losses, especially of great impact on the adult child in the long term.

It is noteworthy that there are many formal caregivers involved in the care of the parent with dementia. The experience of support provided by these formal caregivers to the adult child depends on the individual characteristics and approach of the caregiver. There is a clear need from the perspective of formal care for tools and strategies to better understand and support the loved ones of the patient. Within the informal social circles of the adult child, differences in coping mechanisms can sometimes manifest themselves in not experiencing the desired support.

Because grief is often associated with loss through death, anticipatory grief that accompanies dementia does not always receive the attention it deserves. Anticipatory grief for the adult child is unique to the individual, unpredictable, and ambiguous. Providing space for this form of grief is crucial because it can lead to a healthier and less intense grieving process after the parent's death. Talking to others, sharing experiences, acquiring knowledge, and having social support are all important factors in creating this space.

The exploration of these three processes through various research activities has led to the discovery of a phenomenon: the "period of acknowledgement". This period is characterized by the realization of the adult child that dementia is a progressive disease that cannot be avoided. They also come to understand that it is the disease that is changing their parent, and not the parent themselves. Acquiring knowledge about dementia and grief, and reflecting on their personal experiences, is essential in developing this period of acknowledgement.

The design goal for this project is based on this period of acknowledgement: “to enable the adult child whose parent is dealing with dementia to discover the impact of the dementia on themselves with the help of knowledge about dementia and grief, thereby increasing the awareness and creating more room to grieve over time.”

Various ideas were generated in brainstorming sessions, translated into physical prototypes to be tested with adult children, and further developed in co-creation. These design activities resulted in the development of a tangible reflection tool called "grip", which aims to provide space for adult children to explore and share their personal experiences and emotions related to the impact of dementia on their lives.

The grip tool facilitates conversations between the adult child and a conversation companion with tangible words to visually represent experiences, emotions, and losses related to dementia. It allows for the exploration of coping strategies and the development of new ways of coping, and it aims to provide social support and space for the adult child to share their grief. Overall, the grip tool aims to enable the adult child to better understand the impact of dementia on their lives and increase their awareness, creating more room to grieve over time.

However, further research will be needed to test and improve the impact of grip. Design recommendations for improving the tool have been given, such as simplifying the design, improving usability, testing with people in the avoidance phase, testing the effect on the long term, and creating a more inclusive design. In addition, suggestions have been made for implementing grip in the future.