Supporting family carers of people living with dementia in a pandemic

Posted by Mark Parkinson, PhD in Health Psychology, Northumbria University

Social coping: offering family carers a lifeline in turbulent times

Despite our enduring efforts to battle COVID-19 and the headlines and attention the pandemic rightly warrants it is important not to lose sight of some of the separate public health issues which not only continue to grow apace in the background but may also be made worse by the social impact of the virus. Among the issues in danger of being overlooked is how the UK will respond to the growing number of people living with dementia which is set to reach one million by 2025.¹

Presently, family carers provide the bulk of care and reliance on family care is becoming even more essential given the lack of formal care available² and the Europe-wide shift away from reliance on formal care and towards ‘ageing in place’/ care in the community.³ However, a key issue is the high level of long-term stress family carers have to endure⁴ as a result of dealing with a combination of financial, social, mental and physical challenges over long periods of time and how this often leads to family care becoming unsustainable with reliance on formal care the only option. Family carers currently face a vicious cycle that threatens to derail family care itself-despite the wishes of carers and carees:

A key question is how this cycle can be avoided. Crucially, it is not the stress that threatens to derail family care, but how well family carers can COPE with stress. A critical coping strategy is carers’ capacity to seek out and receive effective emotional and practical support, particularly at times when they are most in need of it. This kind of coping strategy is called social coping (SC) and has been found to be effective in safeguarding mental health⁵ due to the positive interactions, support and assistance it can deliver.⁶

However, there is a pressing need to better understand what works to promote social coping. This calls for a deeper understanding of what helps or hinders SC and how this knowledge can be applied by providers of formal health and social services, together with the voluntary and charity sectors to promote social coping to make the family care of people living with dementia sustainable.

What we did

Our research, based on work carried out as part of a Fuse sponsored studentship, investigated ‘What works to support family carers of people living with dementia’. Coping⁷ and more specifically social coping⁸ was identified as important to ‘what works’ and this prompted follow-up post-doctoral research to investigate SC further. The findings (so far) can be found in our recently published article⁸ which highlights the need for formal providers to be aware of six key hindrances to family carers’ use of this important coping strategy:

Achieving a better balance between what helps and hinders the adoption of social coping is critical to promoting it and also pivotal to ensuring the long term sustainability of family care of people with dementia. The full report⁸ (briefly outlined here) was presented by the Chairman of Dementia UK to Helen Whately, the Minister for Care at Department of Health & Social Care, on 3 November. This is a work in progress and follow-up is already underway to reveal further insights into social coping theory. For example, how social coping might be used alongside other helpful coping strategies, the pinpointing of carer coping strategies that could be unhelpful in the long term, and the deeper exploration of how providers (health & social care, allied health care services and voluntary organisations) can put social coping into practice, including improving opportunities for carers and carees to socialise.

In the current climate it has never been more important to deepen our knowledge of coping and to separate carer coping strategies which are helpful, and lend themselves to making family care sustainable, from those that are unhelpful. Providing long-term family care for people living with dementia has never been easy, but the arrival of COVID-19 means family carers now need the additional lifeline of improved external support and the right incentives to accept this support⁹ if they are expected to navigate especially turbulent waters.



References

1. Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A. & Rehill, A. (2014). Dementia UK: Update Second Edition. Report produced by King’s College London and the London School of Economics for the Alzheimer’s Society. Retrieved from: http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf 
2. Alzheimer’s Society. (2020). Facts for the media. Retrieved from: https://www.alzheimers.org.uk/about-us/news-and-media/facts-media
3. Glasby, J., & Thomas, S. (2018). Understanding and responding to the needs of the carers of people with dementia in the U.K., U.S. and beyond. Birmingham: University of Birmingham Press.
4. Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International psychogeriatrics/IPA, 26(5): 725.
5. Norris, F. H., & Stevens, S. P. (2007). Community resilience and the principles of mass trauma intervention. Psychiatry: Interpersonal and Biological Processes, 70(4): 320-328.
6. Lee, C. Y. S., Anderson, J. R., Horowitz, J. L., & August, G. J. (2009). Family income and parenting: The role of parental depression and social support. Family Relations, 58(4): 417-430.
7. Parkinson, M., Carr, S. M., Rushmer, R., & Abley, C. (2016). Investigating what works to support family carers of people with dementia: a rapid realist review. Journal of Public Health. DOI:10.1093/pubmed/fdw100.
8. Parkinson, M., Carr, S.M. & Abley, C. (in press). Facilitating social coping-‘seeking emotional and practical support from others’-as a critical strategy in maintaining the family care of people with dementia. Journal of Health & Social Care, 00:1-12. http://dx.doi.org/10.1111/hsc.13159 
9. Egan, K. (in press). Digital technology, health and wellbeing and the COVID-19 pandemic: it's time to call forward informal carers from the back of the queue. In Seminars in Oncology Nursing. https://doi.org/10.1016/j.soncn.2020.151088

Research journey for hospice evaluating its innovative dementia care

Posted by Nicola Kendall, Namaste Lead, St Cuthbert’s Hospice and Dr Sonia Dalkin, Senior Lecturer in Public Health and Wellbeing and Lead of the Fuse Healthy Ageing Research Programme

To celebrate World Hospice and Palliative Care Day, we wanted to share part of St. Cuthbert’s Hospice’s research journey, in collaboration with Northumbria University. Specifically, we wanted to share some of the innovative activity that has been taking place in practice surrounding ‘Namaste Care’ and the evaluation of it with Fuse funding.

What is Namaste Care?

As dementia progresses, family carers describe a changing relationship and sense of loss, which can cause significant distress. Finding new ways of communicating is important to help the family carer and person with dementia to maintain a good quality of life. ‘The End-Of-Life Namaste Care Program for People with Dementia’ (Namaste Care) challenges the perception that people with advanced dementia are a ‘shell’, a ‘living death’; it provides a holistic approach based on the five senses. Early evidence suggest that it can improve communication and the relationships families and friends have with the person with dementia.

How has St. Cuthbert’s Hospice used it?

St Cuthbert’s Hospice in Durham has started to provide Namaste Care in the person’s own home, as opposed to its more traditional use in care homes. We train volunteers who are then matched with a person with dementia, in terms of personality, abilities and interests, for example. Volunteers visit the person, usually weekly for two hours and try to build a bond with the person living with dementia and the family.

Why did we want an evaluation?

Evaluating Namaste Care has proved challenging for many organisations. It is straightforward to measure reduced number of falls, less infections and reduced agitation, but teasing out the nuances of why the approach works requires more detailed study. Also, we were aware that our use of Namaste was somewhat novel, with only one other hospice in the UK implementing Namaste Care in people’s own homes. A team at Northumbria University, led by Dr Sonia Dalkin applied to the Fuse Pump Prime fund and was successful in attaining a small pot of funding to do some preliminary evaluation of our use of Namaste Care.

What did the evaluation find?

The preliminary research found that when used in people’s own homes Namaste Care has positive outcomes, such as increasing engagement and social interaction. Previously, social interaction had potentially been overlooked in the literature as an important outcome of Namaste Care. This was particularly important for carers who felt that their loved ones with dementia often didn’t have any interaction with others, beyond those living with them. The importance of matched volunteers was also highlighted, and special relationships were built between volunteers and the person with dementia. Family members would often use the time when the volunteer was present as respite as opposed to taking part in the session, and this highlighted interesting perspectives on their involvement in Namaste. The evidence suggested that those who care for a person with dementia at home provide continuous care and have little input from other services, therefore provision of two hours contact with a trained Namaste Care volunteer allowed them to concentrate on other things, knowing that the their loved one was in safe hands. This is in contrast to the usual delivery of Namaste Care in care homes, where family members may feel more able to get involved as they do not provide continuous care.

What next? 

Book for organisations and carers
interested in using the approach

• Delivery of Namaste Care in various settings
The ethos of the Namaste Care approach has proved transferable into various care settings at St Cuthbert’s hospice. We now run a Namaste inspired ‘Potting Shed’ Men’s Group and we deliver Namaste Care at the bedside in an acute hospital. We are also in the early stages of discussions about taking Namaste Care into prisons, either via staff training or training prisoner buddies. We are very proud to say that due to this and other work we have been shortlisted as finalists for ‘Best Team Award’ in the 10th National Dementia Care Awards 2019.

• Spreading the word
The Hospice has developed a training programme which is steadily gaining popularity. Nicola Kendall (Namaste Lead) has also written a book as a guide for other organisations and carers who are interested in using the approach: ‘Namaste Care for people living with advanced dementia - A practical guide for carers and professionals’. The book is now available from Jessica Kingsley Publishing.

• Research
Nicola has just attended the Namaste Care International Conference and continues to take Namaste Care from strength to strength at St Cuthbert’s Hospice. We are now planning to further evaluate our work, building on the findings of the preliminary evaluation and the guide book… Watch this space!

Beyond bricks and mortar: re-thinking home and health

Dr Philip Hodgson, Senior Research Assistant, Northumbria University

In a time of continued public spending cuts, policy drivers to age in place (to grow old in the home or in a non-institutional setting in the community) and an increasing ageing population, the challenge to ensure that people can live longer and healthier in their own homes is growing. Yet, solutions for this, when a host of other factors – the development of housing to meet commercial rather than health pressures, future generations with little equity in housing that can be used to fund future care, the prevalence of a belief in a “forever home” – are difficult to identify.

That was one of the core messages discussed at the first ‘Home and Health’ research group hosted by Northumbria University and Fuse (via the pump-priming research fund) last month. This brings together researchers, practitioners and policy makers interested in the impact of housing on health. The seminars aim to foster a core working group, culminating in the development of concrete plans for collaborating on further research in this area. Building on insights from previous Fuse Quarterly Research Meetings (‘Creating Healthy Places in the North East’ in October 2015 and ‘Reuniting Planning and Health’ in April 2016), the seminars aim to take stock of existing evidence on how housing conditions can promote or impede healthy ageing, and identify gaps for further research. Our first seminar explored priorities for research from a policy perspective and we were thrilled to welcome Gill Leng (National Home and Health Advisor to Public Health England) to present.

Gill Leng, Public Health England, presenting at the Fuse research meeting

Gill highlighted the need to think about ‘homes’ (a term which people identify with and encompasses emotional connections to a place of living) rather than just ‘housing’ (a term used when referring to the workforce and describing bricks and mortar). While evidence and action often focuses on the risks posed by unhealthy homes, little is done to address unsuitable or precarious housing. Although most older people own their homes, these are not necessarily healthy. The challenge we face is to identify an approach to housing which allows its support to develop and mirror our own changing health needs through the life course. This is not just a case of using adaptations and facilities, but reframing how we conceptualise the home as a physical location, a part of a wider social environment and a personal / psychological space.

The conceptual spaces of home illustration used in the seminars 

Group discussions focused on this issue (among others). At the personal level, a tension was found between the maintenance of private life and the role of external sources of support. Current policy relies on care delivered by family members, but this can in turn cause problems for individuals without these links. Also, how do we develop mechanisms that initiate people’s thoughts on the best accommodation for them before they reach a point when they’re in crisis / a change is urgently needed and driven by necessity rather than choice (e.g. when people with dementia still have capacity to make an informed choice)? At the level of buildings and services, these problems take on a more concrete form, where the permanence, inconvenience and cost of a housing adaptation to support health is seen more as an obstacle to avoid rather than an enabler in the future. Meanwhile, within social and environmental factors, the current focus of housing policy on volume, rather than quality of public space, and a decrease in social cohesion were both noted as linked factors that could influence health as the population ages. The depth of discussion at each of these levels highlighted the importance of issues of home and health. But to address it we need to move beyond the ideas of bricks and mortar, and consider how we think about and use our homes to facilitate our health and wellbeing as individuals and a wider society.

Our first seminar explored priorities for research from a policy perspective

All of these issues will be picked up in future sessions, which will focus on good practice, existing research in the field and funding opportunities. We’ll be continuing to blog about each of these events and their outcomes, so please check back for more information soon.

If you are interested in joining the group and attending future seminars, please contact Phil Hodgson philip2.hodgson@northumbria.ac.uk

From left: Peter van der Graaf, Monique Lhussier, Natalie Forster, Phil Hodgson

and Dominic Aitken; organising team for the home and health research interest group

Dementia: not drowning but waving

Posted by Mark Parkinson, Post Graduate Student at Northumbria University

It's Dementia Awareness Week in England as part of Alzheimer’s Society’s ongoing campaign to raise public awareness of this disease. It also affords us the opportunity to take stock of just how far we have progressed since the dark days of the 1980s. Back then a mood of extreme pessimism surrounded dementia amid stark warnings that this ‘rising tide’ represented an unstoppable tsunami-like force that would engulf the UK. Attempts to avert the coming disaster were seen as futile and hopeless, akin to King Canute holding back the sea. The prevailing mood of despondency was ‘justified’ by nine fallacies of dementia emanating from a general lack of knowledge and understanding about dementia.


The Great Wave off Kanagawa

• Fallacy No.1: Dementia was commonly perceived to be part of ‘normal ageing’. Dementia is now widely acknowledged as a clinical condition characterised by neurobiological abnormalities that distinguish it from so-called ‘normal’ ageing. The public perception of dementia as a disease that is separate from ‘normal’ ageing is increasing in the UK but campaigns such as Dementia Awareness Week are still necessary.
• Fallacy No.2: Dementia is unavoidable. Protective factors that help guard against vascular dementia in particular include our lifestyle choices, including smoking cessation, regular exercise, adherence to a healthy diet and avoiding becoming obese. The identification of potential triggers for dementia paves the way for future interventions that might mitigate the onset of dementia entirely, including monitoring for catalysts for dementia such as cardio-vascular disease, obesity, diabetes and depression. Intervention programs targeting at-risk groups have demonstrated success in preventing dementia, e.g. FINGER (a two-year programme that focuses on diet, exercise, cognitive retraining and monitoring and treating vascular risk). Latest research also highlights further candidate triggers for dementia such as interleukin 33 (IL-33) protein deficiency which may be remedied via injections to prevent dementia.
• Fallacy No.3: Dementia is irreversible. Although this remains the case for now, the development of treatments such as Galantamine have been shown to at least moderate the effects of dementia.
• Fallacy No.4: Dementia is untreatable. The search for a cure for dementia remains ongoing and we have moved into an era where the potential discovery of better treatments and an eventual cure has never been so high. For now though prevention via identification of key triggers remains the main option in the absence of a cure.
• Fallacy No.5: Dementia is a diagnosis to mortality within seven years. Dementia related diseases such as Alzheimer’s now have a typical duration of 10 or more years and evidence suggests that, in general, people with dementia are living longer. The challenge continues to be ensuring they live as well as possible.
• Fallacy No.6: Dementia is too varied and unpredictable to treat. Greater understanding of the different sub-types of dementia, their different causes and symptoms, combined with improved ability to detect them makes treatment for dementia a more viable possibility.
• Fallacy No.7: Dementia is only detected when it is already too late to act. This remains a key issue; however, improved diagnostic tests and screening have improved early detection of the disease.
• Fallacy No.8: Dementia is too expensive to treat. Recent interventions such as Cognitive Stimulation Therapy (CST) can be delivered to people living with dementia via just 14 hourly sessions. CST has demonstrated equivalent but more sustained effects compared to relatively expensive drug treatments.
• Fallacy No.9: The number of those with dementia will increase exponentially in the future. Recent comparisons between CFAS1 (Cognitive Function and Ageing Studies) (1991) and CFAS2 (2015) conducted by Cambridge University reveal that dementia prevalence in the UK has actually declined by 22 per cent over this 24 year period. Those born in the latter part of the 20th century exhibit a lower risk factor for dementia than those born earlier. The tsunami warnings of the 1980s have been proven wrong.

Importantly, all this does not signal a time to relax. The need to raise awareness of dementia and the challenges associated with it remains as urgent as ever. In the 1980s a sense of urgency towards tackling dementia provided a much needed catalyst for change. Today a key difference is that this urgency is no longer fuelled by impotent fear but by renewed hope and optimism that galvanises fresh impetus to all our endeavours to beat the disease.

With acknowledgement to the inspired presentation on 25 April, 2016 at the first Gateshead Dementia Conference by Dr.Daniel Collerton (Clinical Psychologist associated with dementia care at The Queen Elizabeth Hospital, Gateshead).

Shielding against the impact of the dementia time bomb

Guest post by Mark Parkinson, Postgraduate Researcher, Department of Public Health & Wellbeing, Northumbria University

Today (September 21) marks the anniversary of World Alzheimer’s Day which aims to raise public awareness about this most common form of dementia.

Dementia represents one of the main causes of disability in later life. Current estimates indicate that someone is diagnosed with the disease every 68 seconds. Alzheimer’s affects 44 million people globally with this figure predicted to triple over the next 35 years - a phenomenon aptly named 'The Dementia Time Bomb'. Advances in health mean many more people are surviving life-threatening diseases such as cancer, but susceptible to life limiting diseases such as dementia.

By 2030 more than 20 million people in the UK will be aged 60 or over. For people familiar with dementia it is one of the diseases most feared as they approach 60 years of age, a fear justified given the increased prevalence of the disease once we reach this milestone, a fear heightened by the fact that it is irreversible and terminal.

The impact of all this truly hit home during a recent conversation with my mother. Renowned for her ability to trounce all-comers at Scrabble, she struggled to recall the word ‘padlock’ prompting her to quip, with mock seriousness, that perhaps she was succumbing to the disease. My mother’s perception of Alzheimer’s still follows a traditional and mistaken one that Alzheimer’s disease is a typical and therefore ‘normal’ part of ageing. She is not alone: it is estimated that around 60% of people worldwide also incorrectly believe this, while 40% of people mistakenly think it is not fatal. I on the other hand stopped dead in my tracks. The sudden realisation that my mother’s uncharacteristic memory block might genuinely be a precursor to the more serious cerebral ‘padlocks’ associated with dementia. As a researcher involved in dementia I was only too well aware that Stage 2 of the disease is generally represented by very mild cognitive decline, including deficits to semantic memory that can include a sudden inability to recall everyday words. Much worse though was my knowledge that the later stage of Alzheimer’s can be marked by far more severe symptoms as part of a terminal degenerative process that can endure for 15 long years. A key question ran through my mind at this point: who would care for my mother if she did develop dementia?

In the vast majority of cases it is a family member who will elect to take on this role. One in eight of the UK adult population already provides such an unpaid but invaluable service. However, a central problem with our continued reliance on unpaid care is that, in general, family carers of people with dementia experience greater health inequalities due to the chronic stress commonly associated with long-term caregiving. This threatens carers' health whilst also undermining their ability to continue to provide care. A key question therefore is, ‘who will care for the carers?’ This question was the springboard for the research project I am presently engaged in which seeks to investigate, ‘What works to support family carers of people with dementia?’ While myriad resources exist that might potentially be made available, what is noticeably absent is any agreed ‘gold standard’ of support that might be put into place, tailored according to the different stages of Alzheimer’s. Unlocking this particular dementia challenge will not prevent the ‘time bomb,’ but it can offer families a much needed protective shield if and when that time does come. The need to raise awareness of dementia and the challenges associated with it has never been more urgent - the disease lies on all our doorsteps. 

Mark is currently engaged in a project concerned with several key questions related to Alzheimer’s disease: (i) which factors remain crucial to resilience-building for family carers of people with dementia (PWD) in order to maintain and sustain informal caregiving and which hinder it (ii) how can tailored support best be targeted to address the needs of specific carers? (iii) how can the inherent health inequalities faced by family carers of PWD be reduced? 

UK Dementia Awareness Week 2015 took place 17-23 May. If you wish to find out more about Alzheimer's please visit the Alzheimer's Society website.

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The 'C' Word VI: Crisis

Posted by Jenni Remnant and Libby Morrison

The Age UK Care in Crisis Report 2014 highlights the problem in Health and Social Care across the country with cuts in real terms; most councils are now only covering critical care criteria, so that those people with moderate needs will not be entitled to help.

Newspaper headlines shout out about the looming national crisis in care and public health for the elderly, and particularly the ‘ticking time-bomb’ of dementia. The number of people living with dementia looks set to rise year on year. How will our health and social care system cope with this – is crisis inevitable?

What perhaps isn’t highlighted is how, as with any crisis, it is a collection of individual experiences of people living with dementia and their carers.


An aged but blank piece of paper - having all the experience and history, but none of the words - because that's
 what dementia and Alzheimer's patients can seem like. It's there in the book, but you can't read it off the page.
 

The following diary extract is by someone recently caring for her elderly parents. Her mum was the main carer for her dad who was in late stages of dementia. Her mum had refused most offers of help as he was ‘HER husband’ and it was ‘HER job’ to care for him. She had become increasingly tired, and confused herself. The extract covers one weekend in crisis.

Friday

4.30pm
I went round to Mum and Dads to bring them some cakes I had made. I was met with a scene of chaos. Mum had packed up suitcases and bags which were stacked up in the living room. "What are you doing Mum?" She replied: "We don’t like this house, we are going back to our old one." I tried to explain that she couldn’t go back to her old house; they had sold it 7 years ago. There were pills in different bags, piles of notes and coins, clothes, rubbish etc. Dad was agitated of course, pacing up and down and making his ‘um um’ sound. Oh god what to do – Jessie is due back from school, the dog needs walked, I have a conference to go to tomorrow – I unpack all the bags and put everything away, make them tea and toast and promise to come back. Beg Mum not to leave the house with Dad. Run home make tea for Jessie, and walk the dog.

Dad once led a campaign to save the local library – and succeeded.

6.30pm
She's packed all the bags again and says her and Dad are leaving the house. She has drunk some whisky and possibly taken her sleeping pill. If I phone the GP or 999 they will probably take her to hospital – what then for Dad? He needs 24 hour care – where would he go? I have no space in my house and I need to care for Jessie and (just as an afterthought) go to work tomorrow! How can I do that – how can I not? If I don’t go into work I won’t get paid (care work – poor terms and conditions – ironic!). But the thought of Dad getting sent to any old place in an emergency, scared and alone, I can’t do it. Maybe if I can get them both to bed and to sleep, Mum might be better in the morning. Phone my sister and aunt to see if they can help tomorrow while I go to work. Ask my friend if Jessie can stay over with them tonight. Go to make a cup of tea – there is urine in the cutlery drawer – Dad has taken to peeing randomly in unexpected places. Clean out drawer. Make tea. Dad makes his ‘um um’ noise rhythmically and noisily – it drives me mad.

Dad was a school governor. He fund raised and campaigned to get new facilities and buildings for the local school.

10pm
They are both in bed (for how long is anyone’s guess). I make up a bed on the sofa and write this diary. I can’t sleep, although I am very tired.

3am
Dad is in the kitchen – peeing into a pie dish in which my aunt had brought them dinner yesterday. I clean up and lead him back to bed. He doesn’t object (thankfully).

Dad used to play tennis and rugby and was a big football fan.

Saturday

9am
My aunt arrives so I can go to work. Mum is a little better, seems less confused and has slept well. I hide the whisky before I leave. My sister and aunt go in to see them 3 times today. We have agreed to try and manage the situation until Monday, when we have a pre-arranged meeting with Social Services anyway as problems have been mounting over the last few months.

Dad set up and ran community education classes for local people.

6pm
Things are a little calmer tonight. Mum is clearly still confused but more reasonable. I cook them both tea. My aunt phones for an update. She says: "I didn’t think my toad-in-the-hole was that bad" when I recount the story of the pee in the pie dish!! We both laugh at that. But then I find myself in floods of tears – go upstairs quickly so they can’t see.

Dad has a glass plate which was presented to him for donating blood 75 times – there is a little certificate too.

9pm
I have given them dinner and we have watched a bit of telly. Mum doesn’t seem to know where anything is in the kitchen. Should we phone the doctor anyway? They will try and get us to bring her in to see them (I know of old). But that means bringing Dad and that means…….. oh let's leave it until tomorrow.

Dad loves singing and all sorts of music. He was once a choir boy in a big church in Edinburgh.


This is only the briefest of insights into the personal dimension of the impending dementia crisis, but in this limited glimpse at the nuanced and emotive narrative, it is already painfully obvious how much of a challenge public health professionals and researchers, and the health and social care structures in the UK have on their hands.