This article won the The Woodhouse Prize in Geriatric Medicine. It discusses the carer burden of Alzheimer’s dementia and how evidence-based interventions should be utilised to support families better at home, particularly individual carer therapies and respite care.
During my chronic disease placement block in Bridgend, I had the privilege of meeting many older people with dementia. I was placed on the dementia-turned-Covid ward and contracted the virus myself during the four weeks. I decided to use the time at home to explore a case that kept me thinking long after I closed the ward door. This is the story of Mr Jones (not his real name), his wife, and how we can support people better in the future. By showing Mr Jones first as a young man I hope to intercept the temptation to see geriatric patients as a list of their diagnoses and medications first, and as a person second.
Mr Jones is the 2nd Engineer leading a Navy fleet. He has travelled the world and takes pride in fixing the most complicated of nautical machinery. He is a keen rugby player. One evening, at a village dance, Mr Jones asks the prettiest girl there to dance with him. As they walk home together, Mr Jones knows that she is the one.
Today, Mr Jones is lying in the hospital bed in front of me. He is old, thin, and his skin is prickled with ulcers.
I ask Mr Jones how he is feeling. "Fine," he replies cheerfully. He reports no pain and smiles as he agrees to talk to me. It becomes clear that while Mr Jones can give me moving and vivid descriptions of his past, he is orientated to neither time nor place. Mr Jones has Alzheimer’s dementia, along with multiple diseases of old age including atrial fibrillation, osteoarthritis, and chronic kidney disease. He is prescribed the appropriate medications.
Three weeks ago, Mrs Jones awoke to find her husband trapped between the wall and the bed. Overnight, she had forgotten to put the bed brace up and he had slipped in the gap. It took a team of firemen and paramedics to release Mr Jones. Fortunately, he escaped with no serious injuries. This is the event however, that forces Mrs Jones to admit that she can no longer cope. That day, in the Emergency Department, a DNAR formed is signed.
Within five days of his admission, Mr Jones tests positive for Covid-19. He is moved around the hospital regularly, each time disorientating him further. A comprehensive capacity assessment concludes that Mr Jones does not have capacity to choose where he should live. The best interest meeting decides he will be discharged to a nursing home.
Since meeting at that dance, Mr and Mrs Jones have shared seventy years of marriage together. When I asked Mr Jones what his wife worked as he replied that he didn’t know, but was sure it was something amazing. “She can do anything,” he beamed with pride. He repeatedly told me her name, and how clever she was.
There is no cure for Alzheimer’s dementia; we are forced to accept the trajectory. It is a progressive and debilitating disease that interrupts every aspect of normal life. Not to be overlooked is the impact on informal carers, in this case, on Mrs Jones.
Mrs Jones is one of the estimated 670,000 people in the UK acting as an informal, unpaid carer for a person with dementia. Together, these carers save the taxpayer £11 billion each year.1 Without these people, the NHS and social care would be overwhelmed. There is therefore not just a humanitarian reason to support informal carers, but an economic one.
Unfortunately, caring for a loved one with dementia puts great strain on the family unit. A major report identified significant health, social and financial impacts of informal caring.2 Alarmingly, they found that 61% of carers suffer from depression. Despite this, only 19% were aware of the support available to them. Mrs Jones described reaching a “crisis point”, where she was unable to cope at home. One needs only imagine her level of emotional distress at this point.
We must, as healthcare professionals, strive to do better.
My experience with Mr Jones inspired me to review the evidence behind interventions that support family carers. One type of intervention involves focusing on the carer’s personal qualities, and how they can be adapted. A recent study3 shows promising evidence that increased carer self-compassion– for example, the ability to forgive oneself, reduces depression and anxiety. A similar paper4 also supports the positive effect of carer self-reassurance and self-efficacy on wellbeing.
Interestingly, research from a Singaporean team5 shows that feeling physically competent at carrying out the care-giving role is not enough, carers benefit most from a feeling of “mastery”, or global control of their lives. These three studies are limited as while they demonstrate the need for a service, they do not provide evidence for the service working. Nevertheless, they provide strong evidence overall to support a role for individual carer interventions, with a focus on increased personal coping strategies.
Fortunately, there is evidence to suggest these carer-focused interventions work. The START (strategies for relatives)6 intervention consisted of eight one-to-one sessions with a therapist, focusing on different topics from dementia education to behavioural activation. Importantly, the final session aimed to equip carers to maintain their new strategies in the future. A CBT type intervention7 also demonstrated positive effects on long term carer coping wellbeing.
Group therapy to support dementia carers has produced varying results. A program in Russia8 showed a significant reduction in carer-burden six months following the intervention, but no lasting effect on carer depression. A physician-led group education course9 also demonstrated no reduction in carer stress. Moreover, while another study did show a positive increase in carer wellbeing following group therapy, the same increase was shown in the control.10 This could be due to the in-depth personal interviews used to assess the carers; the act of being listened to might have improved their wellbeing.
Perhaps most importantly, in one study the use of “Reminiscence groups” was shown to cause harm11 as carers developed increased levels of stress following the intervention.
During the pandemic, in person support services have been severely restricted. There is an ever-increasing need for carers to be able to access support remotely. The use of a professionally-facilitated online forum, “WeChat” was piloted for 159 family cares of people with dementia, using the service for three months.12 The results reported a significant decrease in carer depression, stress, and helplessness scores.
An earlier study13 also showed that a course of behavioural coaching via telephone consultations improved carers’ depression symptoms. These results were maintained at six months post-intervention, but not to the same level, prompting the need for on-going or booster sessions.
However, other virtual interventions had less positive results. While the use of mobile “experience sampling”14 did show an increase in carer wellbeing immediately after the course, at the six month follow up carers were back to their baseline. This reinforces the need for ongoing care of carers - not just short-lived interventions. Furthermore, the use of the UK Alzheimer’s Society forum “Talking Point” was found to have no impact on carer wellbeing.15
The literature shows that there is significant evidence to support the role of individual carer therapies, focusing on developing skills that improve emotional resilience. I am hopeful that this could be achieved using both online and in-person mediums, depending on patient needs and resource availability. Furthermore, individual care therapies should be used in tandem with respite care.16 Perhaps it is time to move away from the more traditional peer education groups and embrace a more personalised medicine.
Often it is easier to focus on the problem in front of you than take a step back and look at the bigger picture. This could not be more true for a medical student trying to get some meaning out of a placement. There are always skills to get signed, cases to present, deadlines to meet. Older patients seldom have the discrete, isolated problems represented in our exams.
This period of isolation has given me time to reflect about the patients I have met without moving onto the next sign off. I do not know what kind of support Mrs Jones received, but I am hopeful that in the future we will begin to treat both patient and carer for the effects of dementia. If we successfully support carers early on, we can help prevent families reaching a crisis point like Mrs Jones did.
Kitty Towl, 4th Year Medical student, Cardiff University
This case study won The Woodhouse prize in Geriatric Medicine
- Prince, M. and Knapp, M., 2014. Dementia UK: Update Second edition. Alzheimer’s Society 2014
- Carers UK, 2013. Carers Week Report
- Murfield J, Moyle W, O’Donovan A, Ware R. The Role of Self-Compassion, Dispositional Mindfulness, and Emotion Regulation in the Psychological Health of Family Carers of Older Adults. Clinical Gerontologist 2020: 1-13
- Arenella K, Steffen A. Self-reassurance and self-efficacy for controlling upsetting thoughts predict depression, anxiety, and perceived stress in help-seeking female family caregivers. International Psychogeriatrics 2019; 32(2): 229-240
- Chan E, Glass G, Chua K, et al. Relationship between Mastery and Caregiving Competence in Protecting against Burden, Anxiety and Depression among Caregivers of Frail Older Adults. The journal of nutrition, health & aging 2018; 22(10): 1238-1245
- Li R, Cooper C, Barber J, et al. Coping strategies as mediators of the effect of the START (strategies for RelaTives) intervention on psychological morbidity for family carers of people with dementia in a randomised controlled trial. Journal of Affective Disorders 2014; 168: 298-305
- Myhre J, Bjørnstad Tonga J, Ulstein I, et al. The coping experiences of spouses of persons with dementia. Journal of Clinical Nursing 2017; 27(3-4)
- Gavrilova S, Ferri C, Mikhaylova N, et al. Helping carers to care-The 10/66 dementia research group's randomized control trial of a caregiver intervention in Russia. International Journal of Geriatric Psychiatry 2009; 24(4): 347-354
- Ulstein I, Sandvik L, Bruun Wyller T, Engedal K. A One-Year Randomized Controlled Psychosocial Intervention Study among Family Carers of Dementia Patients – Effects on Patients and Carers. Dementia and Geriatric Cognitive Disorders 2007; 24(6): 469-475
- Brodaty H, Gresham M. Effect of a training programme to reduce stress in carers of patients with dementia. BMJ, 1989; 299(6712): 1375-1379.
- Woods R, Orrell M, Bruce E, et al. REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis. PLOS ONE, 2016; 11(4): p.e0152843.
- Han J, Guo G, Hong L. Impact of professionally facilitated peer support for family carers of people with dementia in a WeChat virtual community. Journal of Telemedicine and Telecare 2020; pp.1357633X2091083.
- Steffen, A. and Gant, J., 2015. A telehealth behavioral coaching intervention for neurocognitive disorder family carers. International Journal of Geriatric Psychiatry, 31(2), pp.195-203
- Bartels S, van Knippenberg R, Köhler S, et al. The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia. Aging & Mental Health 2019; 24(12): 2082-2093.
- McKechnie V., Barker, C. and Stott, J., 2014. The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study. Journal of Medical Internet Research, 16(2), p.e68
- Hoskins S, Coleman M, McNeely D. Stress in carers of individuals with dementia and Community Mental Health Teams: an uncontrolled evaluation study. Journal of Advanced Nursing 2005; 50(3): 325-333