LEARNING OBJECTIVES

After reading this article you will be able to:

• • understand the theory of hope in relation to working with families affected by dementia

• • understand and explore the impact of the COVID-19 pandemic on feelings and hope and hopelessness for families affected by dementia

• • weigh up the evidence for hope-based approaches and understand when they may be useful in clinical practice when working with families affected by dementia.

It is estimated that there are more than 900 000 people in the UK living with dementia (Wittenberg Reference Wittenberg, Hu and Barraza-Araiza2019). Dementia is an umbrella term used to describe a group of symptoms that are characterised by memory loss, behavioural changes, and loss of cognitive and social functioning caused by progressive neurological disorders. There are over 200 subtypes of dementia usually caused by neurodegenerative conditions, with the most common types being Alzheimer's disease, vascular dementia, Lewy body disease, mixed dementia (most often a combination of Alzheimer's disease and vascular dementia) and frontotemporal dementia (Sandilyan Reference Sandilyan, Dening and Harrison Dening2019). Lewis et al (Reference Lewis, Karlsberg Schaffer and Sussex2014) estimated that there are more than 700 000 unpaid carers in the UK supporting people with dementia and suggested that if the ratio of unpaid carers to people with dementia was to remain the same this number would need to increase to 1.7 million people by 2050.

Admiral nursing

Dementia UK is a charity that provides specialist support to families affected by dementia using the model of Admiral nursing. Admiral nurses are specialist nurses who have expert knowledge and skills in dementia care. They employ a range of evidence-based interventions to support families affected by dementia, both in terms of developing practical approaches for living with the symptoms of dementia and offering emotional support to help build resilience and coping strategies. The support provided by Admiral nurses can be offered peri-diagnostically (during the diagnostic process) and post-diagnostically, across the life course of the condition, through to end of life and after bereavement (Aldridge Reference Aldridge and Harrison Dening2019). Admiral nurses work across a range of settings, including the community, acute hospitals, hospices, primary care, care homes and the Admiral Nurse Dementia Helpline. Although the composition, funding and remit of Admiral nurse services vary, their core principles and values remain the same (Aldridge Reference Aldridge and Harrison Dening2019).

Telehealth

Blandford et al (Reference Blandford, Wesson and Amalberti2020) define telehealth as the provision and management of healthcare in which individuals (often working with family members) manage aspects of their care with remote support from healthcare professionals. Prior to the COVID-19 pandemic, telephone helplines were becoming an increasingly common and integral component of healthcare delivery, often targeted to a specific condition or disease (Drayton Reference Drayton and Harrison Dening2020). Seen to be cost-effective and to offer a reach beyond traditional geographical boundaries, telehealth approaches are part of the wider response to support self-management as an increasing number of people live longer with chronic conditions (Amalberti Reference Amalberti, Vincent and Nicklin2019). The onset of the pandemic saw an unprecedented increase in the deployment of telehealth as many countries were forced into lockdown and, as a consequence of social distancing measures, there was a need to adapt models of care, leading to a rapid increase in telephone and video consultations (Blandford Reference Blandford, Wesson and Amalberti2020).

The Admiral Nurse Dementia Helpline

The Admiral Nurse Dementia Helpline is one of four registered dementia helplines operating in the UK but is the only clinical dementia helpline staffed by specialist dementia nurses and offering a range of nursing interventions. It offers support via phone or email and operates 7 days a week and 5 evenings a week (Drayton Reference Drayton and Harrison Dening2020). The helpline is available for all, inclusive of: people concerned that they or someone close to them are experiencing symptoms that may be indicative of dementia; people with a diagnosis of dementia; families, friends and carers of people with dementia; and professionals who are caring for someone with dementia (Drayton Reference Drayton and Harrison Dening2020).

Impact of COVID-19 on people with dementia and their family carers

Living with dementia and caring for someone with dementia can be challenging at any time, but COVID-19 increased these challenges owing to the reduction in essential support services as restrictions were imposed (Cousins Reference Cousins, de Vries and Harrison Dening2022; Suarez-Gonzalez Reference Suarez-Gonzalez, Rajagopalan and Livingston2021). It has been identified that people with dementia and their families were disproportionately negatively affected by the pandemic (Greenberg Reference Greenberg, Wallick and Brown2020). Memory assessment services paused operations, day centres shut down, support groups and activities closed or went virtual (Cousins Reference Cousins, de Vries and Harrison Dening2022). Restrictions meant there was limited contact with anyone outside of the household, leading to increased social isolation, and for people living in care homes the enforced separation from family due to measures to reduce infection and the death rate went on for far longer (Suarez-Gonzalez Reference Suarez-Gonzalez, Rajagopalan and Livingston2021).

A rapid review by Suarez-Gonzalez et al (Reference Suarez-Gonzalez, Rajagopalan and Livingston2021) found that people with dementia had experienced decline in cognition, a worsening of symptoms such as depression, apathy and anxiety and reduced functioning during the first year of the pandemic. Furthermore, there had been an increase in the prescribing of antipsychotic and benzodiazepine medication to manage behavioural and psychological symptoms. All of these issues are associated with increased caregiver burden and lower quality of life for people with dementia (Suarez-Gonzalez 2021).

Consequently, there was an immediate increase in not only the number of calls received by the Admiral Nurse Dementia Helpline at the onset of the pandemic, but also in the levels of reported distress and the complexity of the calls. The content of calls also changed significantly and there was a need to quickly adapt practice to respond effectively to callers. Admiral nurses on the helpline found they were suddenly unable to offer their usual advice on real-world support and coping strategies owing to the imposed restrictions and the sudden lack of access to resources. This led to them to experience feelings of helplessness, which have been echoed in the experiences of health workers across the board (Shaw Reference Shaw2020). One of the approaches that enabled Admiral nurses to cope during this time was ‘hope’.

Defining hope

In dictionary definitions, hope is described as a feeling of expectation, or a desire for a particular thing to happen, or grounds for believing that something good may happen. It can also be used as a verb: to hope is to want something to happen or to be the case. Hopelessness, on the other hand, can be defined as a feeling or state of despair, or a lack of hope. However, the literature on hope and health has found the concept hard to define (Cutcliffe Reference Cutcliffe and Herth2002; Duggleby Reference Duggleby, Hicks and Nekolaichuk2012). Hope is a very personal construct, meaning different things for different people. Cutcliffe & Herth (Reference Cutcliffe and Herth2002) examined the spiritual, philosophical and healthcare context of hope, and found that the literature lacked a definition that encompassed all that hope entails within these differing perspectives. In part this is due to the dynamic nature of hope, in that it may mean something different to a person recovering from disease, as opposed to someone living with a terminal or progressive illness. There is also variation in the methodological processes used to evaluate hope that make a clear conceptualisation difficult. Duggleby et al (Reference Duggleby, Hicks and Nekolaichuk2012), in a meta-synthesis of qualitative studies into hope relating specifically to older people with chronic illness, found that hope was a process of reappraising what was important to them, as well as what was realistic, giving a definition of hope in this context being ‘desirable (wanted) possibilities’.

Given the difficulties in clearly defining hope in the healthcare context from which to begin exploring its use as a tool for nurses, this article will provide an overview of one of the main models of hope in the healthcare literature: Snyder's (Reference Snyder2000) hope model.

Snyder's theory of hope

The American psychologist Richard Snyder wrote extensively on the subject of positive psychology, with much of his work focusing on the concept of hope. He developed a theory of hope, which he defined as ‘a cognitive set that is based on a reciprocally derived sense of successful agency (goal-directed determination) and pathways (planning to meet goals)’ (Snyder Reference Snyder2000: pp. 8–9). He refers to the trilogy of goals, pathways and agency, which are central to his model (Box 1).

Snyder (Reference Snyder2000) argues that hope does not disappear in challenging circumstances but can remain with those with a hopeful mindset who seem able to maintain optimism even in the most challenging situations. The theory is interesting from a clinical practice perspective as it characterises hope as a state of doing, rather than a state of being, therefore providing the potential to develop strategies and interventions to increase hope.

Looking at this theory through the lens of the pandemic, it is easy to see why families living with dementia might have struggled to maintain a hopeful mindset. The ability to visualise goals is challenged by the fact that we were all operating in uncharted territory during the pandemic, living with uncertainty and with no clear idea of what the future might look like in terms of restrictions and service availability. People who may have previously been able to generate multiple pathways towards a goal were challenged at every turn owing to ever-changing COVID-19-related policy alongside rising rates of death and infection, making it more difficult to maintain a hopeful mindset as goals became unobtainable. When the ability to act independently and of our own free will is taken away, as was the case under government restrictions, a person's ability to maintain agency thinking (Box 1) and determination is harmed.

When hope is challenged in the ways described above, the outcome can be feelings of hopelessness. Beck et al (Reference Beck, Brown and Berchick1990) developed a model of hopelessness, defining it as negative expectations about ourselves and our future, characterised by being unable to find a solution or way out of our problems. The Beck Hopelessness Scale is widely used and has been shown to be a good predictor of suicidal ideation and suicidality (Beck Reference Beck, Brown and Berchick1990). Carers of people with dementia have a higher risk of suicide than the general population (O'Dwyer Reference O'Dwyer, Moyle and Zimmer-Gembeck2016) and they have been disproportionately affected by the pandemic (Suarez-Gonzalez Reference Suarez-Gonzalez, Rajagopalan and Livingston2021). However, it is still too early to draw firm conclusions about how this might translate into increased suicide risk as a result of restrictions imposed (John Reference John, Okolie and Eyles2020). Considering hope and hopelessness as being on the same continuum, if we were to define hope by reversing Beck's definition of hopelessness (i.e. hope is having positive expectations about ourselves, characterised by being able to find solutions and ways out of our problems) then we can see how it maps directly onto the elements of Snyder's hope model (goals, pathways and agency thinking).

Why hope?

Before exploring practical hope-based approaches that might be useful in working with families living with dementia, it is helpful to consider the evidence base for using hope in practice more generally. Hope has a long history as a psychotherapeutic approach, and hope that things can change may be an important factor in the success of any therapeutic intervention (Lopez Reference Lopez, Snyder, Magyar-Moe, Linley and Joseph2004).

Hopelessness has been associated with poorer health outcomes in older carers (Schulz Reference Schulz and Beach1999; O'Dwyer Reference O'Dwyer, Moyle and Zimmer-Gembeck2016). Hopelessness and depression have been associated with increased cardiac mortality and allostatic load (cumulative burden of chronic stress and life events) in the general population (Anda Reference Anda, Williamson and Jones1993; Gan Reference Gan, Gong and Tong2014; Mitchell Reference Mitchell, Dellor and Sharif2020) and can predict mortality in older adults (Furlanetto Reference Furlanetto, von Ammon Cavanaugh and Romildo Bueno2000; Stern Reference Stern, Dhanda and Hazuda2001).

Schnoll et al (Reference Schnoll, Harlow and Stolbach1998) showed that people with cancer had higher levels of hopelessness than the general population, but levels of hopelessness were not linked to the stage of disease, findings echoed in subsequent studies (Chen Reference Chen2003; Chu-Hui-Lin Chi Reference Chu-Hui-Lin Chi2007). What seemed to be a more significant predictor of hopelessness in this cohort was negative coping strategies (Schnoll Reference Schnoll, Harlow and Stolbach1998), which suggests the possibility that we can increase feelings of hope, even in what might be considered a hopeless situation.

This is mirrored in some of the literature on terminal illness (Sullivan Reference Sullivan2003; Woelk Reference Woelk2008; Brashear Reference Brashear2019), which talks about hope being possible even when the hope of survival is gone. For people approaching the end of life, hopelessness is not an absence of hope, but rather an attachment to a form of hope that is lost (Sullivan Reference Sullivan2003). This has many parallels with the situation of families living with dementia throughout the pandemic: the world was not the same as it was, and they did not know if or when things would return to ‘normal’. As is the case for professionals working with people at the end of life, the challenge for professionals supporting families living with dementia is to enable them to diversify or redirect their perception of hope.

Practice examples

We now consider hope through the lens of three case vignettes, which are based on calls received by the Admiral Nurse Dementia Helpline during the pandemic. Each fictitious vignette will provide the basis for exploring the literature on hope-based approaches and looking at how these can be used in practice to support families living with dementia.

Implications for practice – COVID-19 and beyond

The COVID-19 pandemic threw both professionals and families living with dementia into an unprecedented situation. Families affected by dementia had to learn to cope with a stripped back NHS and social care system, increased isolation and lack of social and family support. As professionals we had to quickly adapt our practice and the interventions we offer to support families during difficult and challenging times. Added to that, many professionals were personally affected by COVID-19 and felt some of the same feelings of hopelessness felt by the families they were supporting.

This exploration of the literature on hope as an intervention has highlighted its connection to, and influence on, a range of health outcomes, and the necessity of hope in achieving good quality of life, even when faced with seemingly impossible situations, such as being separated from a loved one in a care home. It has demonstrated that a range of hope-based approaches can be successfully integrated into existing care practices and interventions, to support families living with dementia through what has, at times, felt like a hopeless situation.

As well as being of benefit to families living with dementia, the integration of hope as an intentional therapeutic approach was also of benefit to the professionals using these approaches. As Flaskas (Reference Flaskas2007) notes in a paper on hope and hopelessness in the context of family therapy, there can be a tendency for us as professionals to attune to the feelings of hopelessness within the families we work with, and holding hope when we ourselves might feel hopeless about their situation can be challenging. By using hope-based approaches the nurses on the helpline were able to stay open to the possibility of the situations families presented with, while still acknowledging the despair they felt in the moment. The use of hope in this way allowed the nurses to cope with the relentless emotional work of supporting so many families in what might be described as hopeless situations. In this way the interventions discussed in this article would be helpful for mental health professionals more broadly.

Although the COVID-19 pandemic may have forced our focus on to the concept of hope and ways to preserve it during a difficult period, there would appear to be an important place for hope as a tool when working with families living with dementia beyond that extrodinary situation.

Future research may be of benefit in exploring the ways in which hope is being used in nursing practice in the field of dementia care and the experience of hope-based interventions from the perspective of people with dementia and their families.