DemiCare+: building a resilience model for informal caregivers of people with dementia
Gepubliceerd op:
Across Europe, millions of family members, friends, and volunteers provide unpaid care for people living with dementia. Their contribution is fundamental to the sustainability of dementia care and support, particularly as the number of people living with dementia continues to grow and formal care systems face increasing pressure. By supporting people with dementia in their daily lives, informal caregivers make it possible for many to remain at home and continue participating in their communities for as long as possible.
This vital role, however, often comes at a significant personal cost. Caregivers frequently experience high levels of stress, emotional strain, social isolation, and changing family relationships. Over time, these challenges can increase their risk of depression, burnout, and reduced quality of life.
What is DemiCare+?
DemiCare+, a European research and innovation project involving partners from Austria, the Netherlands, and Romania, aims to address this challenge by placing caregiver resilience at the centre of dementia care and support. Building on lessons learned from an earlier DemiCare project, the consortium is further developing the digital platform. The project is based on the understanding that supporting caregivers is essential for their own health and quality of life, and, in addition, also for the sustainability and quality of care provided to people with dementia.
To better understand the idea and innovation behind DemiCare+, we spoke with consortium members Kalina Piskorska, Junior Scientist at the Center for Technology Experience of the Austrian Institute of Technology (AIT), Sima Askari Ipakchian (PhD), Senior Digital Care Researcher at Vilans, and Nathalie Stolwijk, Senior Researcher at Vilans. In this three-part series, we explore what the resilience of informal caregivers means and why it is important, the development of the DemiCare+ platform, and the approaches and mechanism that underpin its support for caregiver resilience.
In this first article, we focus on resilience itself, what it means in the context of dementia caregiving, why it matters, and how insights from researchers and caregivers have shaped the foundations of DemiCare+.
Caregiver Resilience in Dementia Care
Resilience is often described as the ability a person has to adapt to adversity and recover from challenging circumstances. For informal caregivers of people with dementia, whose daily lives are often characterized by uncertainty, increasing care demands, and emotional challenges, resilience can be a crucial resource.
According to Kalina’s research, resilience is not simply about coping with difficulties. It is about maintaining balance and continuing to live one's own life alongside the caregiving role. 'Resilience can be understood as the ability to bounce back from adversity and stressful situations. Research has already demonstrated that resilience is especially important for informal caregivers because they encounter significant stress on a daily basis. They constantly need the capacity to recover, adapt, and maintain their own personal lives alongside their caregiving responsibilities. Supporting this resilience is the core goal of DemiCare+.'
At the same time, resilience is not solely an individual characteristic or personal trait. It is shaped by a complex interplay of personal and environmental factors.
To better understand these factors, researchers from Austria, Romania, and the Netherlands conducted a three-phase study consisting of a literature review, interviews with experts, and focus-group discussions with informal caregivers.
Features of Caregiver Resilience
The study revealed that caregiver resilience is contingent on three interconnected features including individual traits, individual social network and access to the wider systemic and organisational support.
Individual Traits and Abilities
The first level concerns the individual caregiver and includes personal beliefs, abilities, attitudes, and characteristics. Some aspects, such as self-compassion, coping skills, and the ability to adapt, can be strengthened over time. Others, such as personality traits, may be less easily changed. Participants also highlighted qualities such as patience, acceptance, and the ability to recognize personal limitations.
One informal caregiver referred to Winnicott's concept of the 'good enough parent' to describe a similar principle in caregiving: 'You have to be good enough as a parent. You don't have to be perfect. You have to be good enough. And I also find that with an informal caregiver. You have to be good enough. You can make your mistakes, but you have to make sure that it is safe and that there is care.'
Relationships and Social Support
The second level concerns relationships and social networks. This includes family members, friends, neighbours, peer support groups, and the relationship with the person living with dementia. Participants emphasized the importance of having people who understand their situation. Emotional support, shared experiences, and the opportunity to talk openly about challenges were described as important sources of resilience.
'There are two neighbours with me that I just tell everything to. One is in exactly the same situation. Then you just have to keep it together. And it really gives you relief. Then we laugh again and we move on.' Importantly, positive moments of bonding within the caregiving relationship were sources of strength for caregivers.
'My mother is a very important person to me - we love each other deeply. I try to bring her small joys: I give her flowers every week, because she loves them. On weekends, I take her out for a walk. Those little moments - her smile, her thank-you - they’re like medicine. They make both of us feel good. That’s why the relationship is so meaningful - it’s about affection, not obligation.'
The Wider System Support
The third level extends beyond the individual and their immediate social network to the broader institutional support system. This includes professional healthcare services, community organizations, workplace support, financial assistance, training opportunities, educational resources, and public policies. These structures can either strengthen or undermine a caregiver's ability to remain resilient over time.
Informal caregivers from the Netherlands highlighted how access to formal support can provide reassurance and help caregivers navigate the challenges they face. 'I have the case manager I can talk to. If the need comes, you can always call them.'
Caregiver Resilience at the Center of Demicare+
We already started with the assumption that resilience was a complex concept. However, throughout the research we realised it is even more complex than we initially thought. The different factors influencing resilience vary enormously between individuals. The idea of the three interconnected features of resilience only emerged after we completed the research process. So, our understanding certainly evolved. If anything, we learned that resilience is even more multifaceted than we originally believed.
For Nathalie, one of the important lessons was that every caregiver's situation is unique. Although participants shared many common challenges, they often drew strength from different sources and meaningful moments.
'During the interviews every informal caregiver shared a different story with a different kind of highlight of their day. What connects their stories is the energy and space to breathe that comes from talking about these meaningful moments. That is why we need a model that captures the full picture, so solutions can focus on what matters most for each person.'
These deeper insights into caregiver resilience are at the heart of DemiCare+. Understanding the complexity in resilience was essential for developing digital support that focuses on what matters most to each individual informal caregiver.