Author: Viktoria Hoel, Marie Skłodowska-Curie Fellow, University of Bremen, visiting Institute for Public Health and Nursing Research, National University Galway Ireland

Published: March 2022

Keywords: dementia, personhood, caregiving dyads, technological aids, technology-driven interventions, social connection, social interactions, nurse-resident relationships, relationship-centred care.

Relationship-centred caregiving
Person-centred care describes a holistic care philosophy that focuses on prioritising the care recipient’s views and wishes. In other words, the person comes before the disease. For caregivers of people living with Alzheimer’s disease and related dementias, it can become increasingly challenging to know the individual’s preferences due to the progression of cognitive impairment and communication difficulties. In these instances, the role of the caregiver to safeguard the ‘personhood’ of the care recipient with dementia becomes even more critical.

We must also remember that caregiving is inherently an interpersonal, collaborative and a social process, all the more in a dementia caregiving context. In some way or another, the unique needs and preferences of the person providing care also influence the caregiving process. In fact, the health and wellbeing of family members providing care, and the relationship with their loved ones, are key influencers of how long people with dementia can live at home before transitioning to institutional care. Even after transitioning to long term residential care, good caregiving relationships are as crucial as ever. Research shows that a major reason for nurse retention in these settings was to have meaningful relationships with residents. Staff explained that such nurse-resident relationships contributed to a sense of individual meaning, giving purpose to their work [1].

The importance of the caregiving dyad and its dynamics
By considering the needs of the care recipient and their caregiver (the caregiving dyad) separately, person-centred interventions have been criticised for being implicitly individualistic [2]. The argument is that relationships in dementia caregiving are overlooked in many studies, with few exploring the dynamics between the dyad members. The strong focus on person-centred care is at risk of pushing the role of the caregiver, and the relationship with the care recipient, into the background. Of recent, relationship-centred care is gaining increasing recognition as a complementary model to person-centredness, to adequately include the relationship between the dyad members

Key ingredients for good relationship-centred care
The common symptoms of dementia can complicate communication abilities and social functioning, influencing the relational dynamic between the person with dementia and their caregiver. The cognitive impairment and personality changes that might occur can leave family members feeling that they are caring for someone else than the person they once knew. In institutional settings, nursing staff also report having difficulties communicating with residents, making it hard to make meaningful connections. This poses a challenge for caregivers, especially when substantial evidence indicates that positive communications can reduce anxiety, depression, and social isolation in people living with dementia while enhancing wellbeing.

Activities supporting interactions between residents and nursing staff appear to positively affect the caregiving relationship, supporting the development of a social connection [3, 4]. Additionally, engagement in social activities that are perceived as meaningful may increase staff satisfaction, which again can feed back into the relationship with the person with dementia [4]. It seems clear that any resource to support people with dementia and their caregivers to socially interact with one another has a mutual benefit on both dyad members.

Positive social interaction and caregiving focusing on the capabilities of people living with dementia have been shown to provide important ways to enhance social connections [3,5], echoing the importance of both person-centred and relationship-centred care. How can such positive social interactions be supported and/or facilitated in relationships influenced by a disease that hinders communication and impairs social and cognitive capabilities?

Technological aids
One major source of communication support is technological aids. We already know that technology allows individuals to connect remotely worldwide. But what about connections at a deeper, interpersonal level, sitting side-by-side? Emerging research suggests the potential for technology to mitigate the consequences of dementia on speaking abilities and impaired memory. This, in turn, can support people with dementia and their caregivers to sustain relationships by finding new ways to communicate and socially interact.

Can technology support people with dementia to socially connect?
We explored precisely how technology can support and enhance caregiving relationships using a systematic review [5]. Specifically, we looked into technology-driven interventions that could facilitate positive social interactions in dementia caregiving dyads regardless of the caregiving setting.

What we found: Tablet computers, social robots, and personal computers were most commonly used to facilitate social interaction between people with dementia and their family caregivers. When looking specifically into how these technologies supported social interactions in caregiving dyads, we found that technology:

1. Served as an icebreaker, providing a conversational platform that gave people with dementia and their caregivers a gateway to initiate dialogue;
2. Increased communication frequency and duration by encouraging more involvement between the conversation partners, as they now had technological aids to support their social interactions;
3. Helped caregivers better understand the person with dementia through devices that stimulate the sharing of memories;
4. Reduced pressure on the caregiver to uphold the conversation by making the communication more reciprocal.

These benefits generated positive experiences for the caregiving dyads, ultimately enhancing the relationship. Still, the findings showed that research in this area is in an explorative phase.

Innovation requires willingness to explore

As relationships are such a large part of our personhood, any tool that can help sustain this is worth exploring, no matter how novel. To further develop technology to support caregiving relationships, people with dementia, dementia care providers, and caregivers need to be open to trying new technological aids. Researchers and innovators need to be willing to explore unknown territory, together with family caregivers and care recipients. This willingness is crucial in uncovering solutions that help caregiving dyads cope and adapt to live well with dementia.

To continue reading about pet robots see the blog article, ‘Enhancing dementia care using pet robots; moving research into real-world practice’, by Wei Qi Koh, Marie Skłodowska-Curie Fellow, National University of Ireland Galway

References:

1.  McGilton, K.S., et al., Making tradeoffs between the reasons to leave and reasons to stay employed in long-term care homes: Perspectives of licensed nursing staff. International journal of nursing studies, 2014. 51(6): p. 917-926.
2.  Nolan, M.R., et al., Beyond ‘person‐centred’care: a new vision for gerontological nursing. Journal of clinical nursing, 2004. 13: p. 45-53.
3.  Astell, A., et al., Using a touch screen computer to support relationships between people with dementia and caregivers. Interacting with Computers, 2010. 22(4): p. 267-275.
4.  Swan, J., et al., Meaningful occupation with iPads: Experiences of residents and staff in an older person’s mental health setting. The British Journal of Occupational Therapy, 2018. 81(11): p. 649-656.
5.  Hoel, V., C.M. Feunou, and K. Wolf-Ostermann, Technology-driven solutions to prompt conversation, aid communication and support interaction for people with dementia and their caregivers: a systematic literature review. BMC Geriatrics, 2021. 21(1): p. 157.

Meet the author:  Viktoria Hoel, Marie Skłodowska-Curie Fellow, University of Bremen, visiting Institute for Public Health and Nursing Research, National University Galway Ireland