‘There was no help really, in knowing what to do about dementia’

I am a mental health nurse who has worked in dementia care in the North East of England for more than a decade; working closely with people living with dementia (PLWD) and their informal carers. I have seen ever-stretched health and social care budgets lead to less available support from professionals and an increased demand for managing dementia care placed at the feet of family and friends. Specialist dementia services end up working reactively, when significant issues for PLWD and their carer are already too much to deal with. We must start working proactively in a way that supports carers to engage with specialist mental health services at the right time.

As the number of people with dementia grows, so the infrastructure of support for those people needs to increase to meet demand. Informal carers, often relatives or friends, play a vital role in the care and support of someone living with dementia and yet, unfortunately, often have to fight with the health and social care system to be taken seriously and to get the support they need (Social Care Institute for Excellence 2020).

The entire dementia care system would benefit from services that support informal carers, in a way that fosters a more mutually beneficial relationship and better enables carers to provide care, develop their caring skills and to plan for the future, so that they are better able to deal with the issues and challenges that may arise.

One couple

Throughout my career I have met informal carers on an almost daily basis. They provide most of the care for their loved ones while struggling psychologically and physically. Whilst I have met hundreds, possibly thousands, of people living with dementia and their carers, all of whom have unique circumstances and challenges, one couple in particular stands out in my memory. They had been married for more than 60 years and for the last nine years, the husband developed dementia. His wife became his main carer.

As the husband's cognition and functioning deteriorated, his wife took over more of the household chores. She found herself having to learn new skills, not only to care for her husband, but also to complete practical tasks such as managing finances or taking care of the garden, which traditionally had been her husband's jobs. Her husband's cognition continued to deteriorate, and even when he did not recognise his wife or would become aggressive, she continued to love and care for him. She looked for opportunities to learn and develop in the caring role, trying to build skills in de-escalation, managing personal care and co-ordinating complex physical health needs, but opportunities to do so were hard to come by.

The strength of this bond, and the wife's eagerness to learn and develop in order to provide care, stayed with me for a long time. Her frustrations at the lack of opportunities to develop, and her selflessness – at times to the detriment of her own physical and psychological wellbeing – got me thinking about how, as professionals, we can better support and empower carers to care.

This led to me undertaking a PhD which focuses on informal carer experiences of dementia services; to better understand what they would value most in terms of professional support, to identify barriers to embedding informal carer-focused interventions in practice, and ultimately to implementing carer focused interventions in clinical practice. I am currently studying for the PhD at York St. John University within the school of Education, Language and Psychology supervised by Professor Divine Charura and Dr Scott Cole. The PhD is a scholarship agreement between the NHS Trust I work for and York St John University.

Impact

The impact on those with dementia and on people who care for them is profound. Dementia is a syndrome that can be caused by several illnesses, and is typified by a progressive decline in multiple areas of function, including problems with memory loss, thinking speed, language, difficulty understanding others and the world around them, changes in personality, difficulty in social situations and difficulty maintaining independence (NHS 2020; National Institute on Aging 2021). Alongside this decline, individuals may develop behavioural and psychological symptoms that may include psychosis, depression, aggression, disinhibition and wandering, which can make care more complicated. As a result, the approach to care often requires careful planning and support from others for PLWD, and the people caring for them, to continue to live well (Department of Health 2009).

The diagnosis of dementia can lead to feeling anxiety, depression and fear. Receiving a diagnosis of dementia has a significant psychological impact, not only on the person receiving the diagnosis but also upon their friends, family or people providing care and support for that person.

Informal carers for PLWD experience higher levels of psychological distress and stress than non-caregivers, and even when compared to caregivers of those with other chronic health conditions (Broadaty & Donkin, 2009). Increasing demand on carers can lead to them experiencing burnout due to the chronic stressors, this is often characterised by emotional exhaustion, depersonalisation and a reduction in personal fulfilment (Takai et al. 2011).

Informal carers have higher rates of depression compared to the general population (Schoenmakers et al., 2010) and in some cases believe that their own needs become somewhat irrelevant, leading to a disregard for their own health needs. Dementia caregivers are sometimes referred to as 'invisible second patients' (Tatangelo et., 2018) and often do not even recognise themselves as 'carers', despite having to adjust their own lives, impacting their own health, employment, and relationships (Carers Trust 2016).

Support for carers often varies across geographical locations. It is not always clear where to access support or even what support exists, with an inconsistent variety of options being available from various organisations such as social services, the NHS or charitable groups. The aim of dementia care is to support PLWD to live well, and this can be facilitated through a combination of support from professionals and informal carers. This three-way relationship between PLWD, their carers, and professionals, referred to as a care triad, is a significant contributor to the effectiveness of dementia care (Tujit et al., 2021).  In practice, care for PLWD and their carers, and this triadic relationship, is often fragmented, and informal carers report that UK dementia services provide a lack of support for PLWD, a lack of support for them as informal carers and reported a lack of carer specific support services (Francis & Hanna, 2020).

A change in the way dementia care is delivered in order to ensure carer-focused interventions and opportunities for informal carers to develop in their caring role are embedded routinely in practice, provides a huge opportunity for psychologists, and the wider health and social care system, to positively impact the lives of PLWD and their carers.

Carer's concerns have not been heeded

"(professionals said) there wasn't a problem, but I knew there was. I managed to get him diagnosed after that, [and that is] when they, I thought, started to take it seriously."
Informal carer of a person living with dementia talking about raising concerns about her husband.
She highlighted changes to professionals two years before they became routinely involved.

The national dementia strategy, developed by the Department of Health in 2007, identified that whilst there is a great deal that can be done to help people with dementia and their carers live as well as possible, often diagnosis and access to support occurs too late in the illness, or during a crisis when opportunities for harm prevention or improvements in quality of life have already passed. Now, well over a decade since the publication of this strategy on dementia care, there seems to have been little change in the provision of support to carers. Carers continue to state that support for them, and PLWD that they care for, is inadequate.

As part of my programme of research I set up a Patient and Public Involvement (PPI) Group with the intention of exploring the experiences of informal carers of people with dementia and to help steer the direction and design of my research. The group consisted of people with lived experience in the role of an informal carer for PLWD. They highlighted some key themes from their own experiences, and it was clear that they shared challenges – particularly in feeling out of their depth and struggling to access appropriate support.

The group highlighted several main points.

Obtaining timely support was difficult. It took them repeatedly asking for help and pushing for professionals to take them seriously before anything was done.

Getting support for themselves at the right time was also difficult. Many said that they only saw professionals when they were already in crisis.

'I was left to my own devices… (my mother) was seen by a nurse and a doctor initially to get diagnosis. I was told what I was doing was reasonable but had no further input from any professionals. I just sort of plodded along… the only time intervention came was just before Mum went into a care home and that was a really, really traumatic day.'

They felt 'left to get on with it' in terms of caring for their loved one and did not know what to do or where to go for help.

'There was no help really, in knowing what to do about it. There was no help in knowing how to treat my mother, or what to do with her when she insisted on putting her underwear on top of her clothes."

The group shared negative perceptions of their future when they were caring. They described their sense of the future as 'dire' and experienced an 'impending sense of doom' regarding what was to come.

'(I had) this impending sense of doom that you're living with all the time, you're grieving for the life you had with the person before dementia.'

They had no expectations of professional support as they did not know what was available to them, despite being actively engaged and involved with mental health services. They felt that the information provided to them about this was inadequate.

'I didn't really have great expectations because they weren't there (in relation to input from professionals) and I guess, to a certain extent, I wasn't really aware as to what things could be done.'

The group all agreed on one thing: more information, education and support from professionals from all backgrounds and across services would have been invaluable to them and PLWD they cared for.

With their experiences of living through being a carer for PLWD, and all the issues or difficulties that come with that, this group were in a unique position to state what could have helped if things were to be done differently. They cited impacts on their own psychological wellbeing, and they all felt that a space to share their experiences and support to manage their own wellbeing would have contributed to their ability to care.

The PPI Group advised that information and education would need to be tailored on an individual basis, but should be provided on a little and often basis, as providing too much too soon would have made them feel overwhelmed and overloaded. Support from all professionals working in the field of dementia care could be improved by awareness of information regarding where to go for support for specific issues. They agreed that support concerning practical, day to day issues would be the most useful.

In summary, carers have, and continue to tell us, that the current support, education and information provision is inadequate, and identify that an approach which is more proactive, as opposed to reactive, is what they would value most.

Next steps to better support

The PPI Group and further recent research indicates that informal carers feel the support and information available to them is insufficient. Most concerning of all, there seems to be little hope that things will improve, as we witness increasing numbers of people with dementia, increasing numbers of friends and family being asked to provide care, and ever stretched health and social care budgets.

Something needs to change, and this means that staff in the field of dementia care, from all professional backgrounds, including psychologists, nurses, doctors and social workers, need to take responsibility to make this happen. The PPI Group helped confirm that there is an urgent need to change the way mental health services work with carers. We need to proactively engage with them early in their carer journey in a way that improves their ability to care.

My clinical experiences, prior research and the resounding voices of this group with lived experience, all seem to concur that the way the field of dementia care currently operates, in supporting and educating informal carers, is inadequate and unsatisfactory.

Informal carers do not need to be experts in every aspect of dementia care, but surely PLWD, their informal carers and the whole dementia care system, would benefit from carers who are: better able to manage their own wellbeing and cope with the role of carer; who have an improved knowledge of available support; and who have the relevant information provided to them at the right level and at the right time.

Research in this area is understudied and change in day-to-day practice can only come once there is evidence that working proactively benefits PLWD, their carers and the dementia care system. So, as a first step, further research in this area is required.

Collectively, as professionals involved in the care of people living with dementia, we need to consider reframing the way we work with PLWD and their carers. At the moment we don't know what an ideal system of dementia carer support in the UK looks like and my research project aims to address this through engaging in PPI groups, systematic reviews of existing research, looking globally for best practice and ultimately embedding carer focussed interventions in clinical dementia practice. Through this we can begin to address the current carer support provision and begin to change the dementia care system to one which prioritises the hundreds of thousands of informal carers who are the backbone of dementia care.

About the author

Lewis McQueen is a PhD student at York St John University.
[email protected]

References

Brodaty, H. and Donkin, M. (2009) 'Family caregivers of people with dementia', Dialogues in Clinical Neuroscience, 11(2), pp. 217-228.
Carers Trust (2016) The Triangle of Care. Carers Included: A Guide to Best Practice for Dementia Care [online]. Available from https://www.england.nhs.uk/wp-content/uploads/2017/11/case-study-supporting-well-carers-included.pdf  
Department of Health (2009) Living Well With Dementia: a national dementia strategy. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf [Accessed 21/03/2022]
Francis, N. and Hanna, P. (2022) 'Informal carer experiences of UK dementia services—A systematic review', Journal of psychiatric and mental health nursing, 29(1), pp. 116-129.
National Institute on Aging (2021). What Is Dementia? Symptoms, Types, and Diagnosis. [online] Available at: https://www.nia.nih.gov/health/what-is-dementia 
Schoenmakers, B., Buntinx, F. and Delepeleire, J. (2010) 'Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review', Maturitas, 66(2), pp. 191-200. 
Social care Institute for Excellence (2020) Working alongside carers of people with dementia. Available at:
https://www.scie.org.uk/dementia/carers-of-people-with-dementia/working-in-partnership/working-alongside.asp Accessed 28/2/22
TAKAI, M., TAKAHASHI, M., IWAMITSU, Y., OISHI, S. and MIYAOKA, H. (2011) 'Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life', Psychogeriatrics, 11(2), pp. 98-104. 
Watson, B., Tatangelo, G. and McCabe, M. (2019) 'Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review', The Gerontologist, 59(5), pp. e597-e610.