First published January 2016, updated March 2022
Dementia describes a set of symptoms that includes memory loss, difficulties with thinking, problem-solving, understanding or language.1 Dementia affects approximately 800,000 people in the UK, with the risk increasing with age, hence it is a common condition in people over the age of 65.2 It is estimated that one in three people over the age of 65 in the UK will develop dementia, with the cost of dementia to the UK being £23 billion.3 There are two main types of dementia: Alzheimer’s disease, (AD) which affects 40–50% of cases and vascular dementia which affects 25%
Alzheimer’s disease is a neurodegenerative disorder that affects the brain of more than 520,000 people in the UK. Most cases are sporadic, however some cases have shown to have genetic links with a mutation in the apoE4 gene, although the exact cause is unknown.4 Proteins build up in the brain in the form of ‘amyloid plaques’ and ‘fibres,’ which leads to a loss of connections between nerve cells, and eventually nerve cell death and loss of brain tissue. There is also a shortage of chemicals such as acetylcholine—which are important messengers that transmits signals around the brain. The current treatments for AD increase the levels of these chemical messengers, which can help to alleviate some of the symptoms. There is no cure and treatments are aimed at halting the progression of the disease.5 AD is a progressive disease, which means that over time more parts of the brain will be damaged and more severe symptoms will develop. Recently, some doctors have begun to use the term mild cognitive impairment (MCI), when an individual has difficulty remembering things or thinking clearly, but the symptoms are not severe enough to warrant a diagnosis of Alzheimer’s disease.6
There are approximately 670,000 people in the UK acting as primary carers for people with dementia.7 Being a carer for a person with dementia is rewarding and challenging. Part of the role of a carer may be to put the needs of the person above your own, which can often lead to a deterioration in your own physical and mental wellbeing.8 It is important as a carer to take respite from care as carers often experience high levels of anxiety, depression and stress, yet their needs are often overlooked.2 As AD is a progressive disease, the carer faces challenges such as cognitive decline, emotional disturbance, confusion, incontinence, reluctance to take medication, financial burdens, grief, loss and much more.
Organisations and financial relief are available in the form of local carer support organisations, a Carers Direct helpline, Reading Well Books, GPs and other health professionals, as well as friends and family. The Government also provides a carers allowance of £62.10 per week, provided you meet criteria such as being over the age of 16 and caring for a minimum of 35 hours a week.
In April 2015, the Care Act was introduced, which replaces the current laws regarding carers and those being cared for. This changes the way in which local authorities carry out carers and needs assessments, how they determine who is eligible. In April 2016 the rest of the Care Act comes into force with changes regarding the charging policies for care.9
The carers assessment is available to any carer who appears to have a need for support and a needs assessment is available for adults with a disability, ill health or old age. Home care, also known as domiciliary care, is also available. This provides support in the home by care workers to assist someone with their daily life. The care quality commission regulate all care providers to ensure they are up to standard and there are two national websites in England where you can look at care.10
Roughly 40% of carers have clinically significant depression or anxiety, which predicts a breakdown in care and therefore the need for care homes, as well as elder abuse.1,2 This highlights the importance of reducing the psychological morbidity of carers.
Aims of review
This review focused on AD and not dementia in general because AD is the most prevalent form of dementia, affecting 40–50% of cases and more than 520,000 people in the UK.4 Carers of family members with AD face a long and arduous struggle, which worsens as the disease progresses. Some of the difficulties listed above are eligible for help, such as financial advice from the Citizens’ Advice Bureau to the Care Allowance. However, the physical and mental burden of the carers themselves is often overlooked. Many carers face psychological morbidity, which includes elevated levels of depressive symptomatology.
This structured review was designed to collate and examine the current evidence about whether coping strategies are effective in reducing the psychological distress of carers. Following this the review will examine what can be done by local organisations and authorities to reduce the psychological burden on carers.
Various databases will be searched and the results collated into a table. The inclusion/exclusion criteria will be decided upon and applied to narrow down the search results. In retrospect, this review was needed to provide a definitive answer regarding whether there are any effective coping strategies for carers, and whether these should be more widely available.
A search of books, journal articles and databases was performed to expand background knowledge concerning dementia, the role and burden of carers and the relevant legislation. Following this, the coping strategies and support available that aided carers was the main focus, as well as the psychological morbidity, which many dementia carers face.
Medical subject headings (MeSH)11 such as ‘Alzheimer’s Disease/Alzheimer’s’ and ‘family/families/relatives’ were used to ensure returned articles were relevant and thus the appropriate databases were searched (PubMed12, DISCOVER13 and SCOPUS14). These three databases were chosen because of their large databases; SCOPUS covers over 15,000 journals and PubMed comprising of more than 24 million citations from Medline, life science journals and online books. The inclusion/exclusion criteria were then applied to the database searches and the abstracts were read of the remaining literature to choose the most relevant texts.
The initial search terms used in the PubMed literature search are shown below. The four terms were entered individually and the number of results is shown in the brackets beside each term. The terms were ‘Coping Strategies’ (14,476), ‘Alzheimer’s Disease OR Alzheimer’s’ (108,822), ‘family OR families OR relatives’ (1,036,934) and ‘psychological stress’ (116,246). The four terms were then combined using ‘AND’ which produced 28 results.
The inclusion/exclusion criteria were then applied to the results from each database search to find the eight texts used in the review.15 There may be some discrepancies between the search engines due to the different options available within each database. Steps were taken to ensure the database searches were as similar as possible, for example, the use of the same MeSH terms11 was seen throughout all of the searches.
The SCOPUS database presented seven eligible articles, but three were removed as they were duplicates. The full texts of the remaining eligible articles were then read and it was decided which articles would be used in the discussion.
The remaining eight texts were then examined in more detail and to assess the level of evidence, the Muir Gray Evidence Classification Scheme criterion was used.16-24 The eligible articles above were then selected to be included in the review and they were critically appraised using the PRISMA statement and the CASP tool.25 Articles four, six, seven and eight were not deemed relevant to this discussion and were hence excluded—reasons are explained in the discussion below.
Not all of the texts were eligible to be included in the review. Articles four20 and seven23 were excluded as they focused on the benefit of education and knowledge about dementia. Although these two articles provided a slight insight regarding the benefit of knowledge on reducing caregiver stress, this was not the main focus of the articles.
The study design in article seven included a huge imbalance of contact time between the control and the intervention group. Hence, the increased social support as opposed to the role of education may have been the cause of improved psychological health. In addition to this, mediating variables such as coping skills were not assessed and should have been factored into the study. General assessments of mood are not very accurate outcome measures, hence measures, which more closely reflect the caregiving experience, such as the Carer Burden Interview, should have been considered.
Articles seven and eight24 were also excluded due to the generalisability of results. Article eight was a revision of the Coping with Caregiving program (article one17), but was based in Hong Kong and hence results may not be transferable to the UK. Article seven was carried out at multiple sites and hence the counselling, expertise and practice would be different at each site. Greater effort should have been made to ensure the programme provided was the same at each site.
Articles six22 and eight24 needed a longer-term follow up to provide more conclusive results. Article eight was also limited by its sample size of 27. The sample size determines the precision or level of confidence there is in the sample estimates. A larger sample size reduces the uncertainty in the estimate and results are more likely to be true to the population with a larger sample size.26 A larger sample size equates to more reliable results and hence this article was excluded. Moreover, article eight only used female participants and article four20 consisted of 62% females and hence there is no generalisability to the male carer population. Article four is also the lowest grade of level of evidence (V) and there was a gradual diminution in the numbers completing the questionnaires.
There are many different coping strategies identified by the articles above. Following a thorough review of all the articles, four distinct coping strategies were identified.
A manual-based coping strategy was effective in reducing affective symptoms and case level depression in carers, as well as the quality of life of carers. Article one was associated with a reduction in the odds of cases of depression in the intervention group, with an odds four times higher than in the treatment-as-usual group. The incidence of clinical depression increased in the treatment-as-usual group, but not in the intervention group. The odds ratios indicate that at follow-up those in the treatment-as-usual group were four times more likely to have clinically significant depression, suggesting intervention is clinically important.
There is also some evidence of a decrease in abusive behaviour and improved mental health of the carers. The care home admittance in the eight month follow up was 4% in the treatment-as-usual group and 6% in the intervention group, but there was no evidence of a statistically significant difference. Hence, admittance should be more extensively analysed in a longer-term follow up. It was hypothesised that in the long-term the intervention group would delay admission to care homes, but the short-term eight-month follow-up didn’t show this. The benefit of delayed admission is that it increases the quality of life of people with dementia, which can reduce the burden on carers.17
Positive approach and solution-focused
Articles two, three and five18,19,21 highlight the importance of a positive approach and solution-focused coping strategies to reduce the psychological morbidity of carers. It was found that less burdened relatives used more problem-solving strategies. There was a statistically significant negative correlation (r=-0.20) between burden and positive coping strategies, which means that when caregivers use specific strategies such as problem-solving and seeking social support, the burden is lowered.18 The Cache County Dementia Progression Study also showed that solution-focused coping was associated with lower depression.21
Caregivers with a lower burdens were examined to see if they used any strategy more than others. Multiple comparisons showed that a positive approach was the most often used (mean = 2.15). Positive coping also decreased the caregiver burden (r= -0.20). Other studies show that low-burden caregivers used a positive approach and problem-solving to a greater degree than more burdened ones.18
Cognitive reframing showed there were overall beneficial effects in reducing psychological morbidity (anxiety and depression) and stress, but there were no effects on coping, carer burden or self-efficacy. Hence, cognitive reframing could be a useful additional tool in individualised support for carers.19 However, solution-focused coping was shown to predict anxiety in the one year follow-up.21
Emotional support and acceptance-based
Articles two shows that emotional support had a negative impact on psychological morbidity.18 However, article five shows that less emotional support is also associated with carer depression that could predict subsequent psychological morbidity. There were small but significant correlations with reduced anxiety and depression and predicted depression was reduced a year later. In the Enhancing Care in Alzheimer’s disease study more emotional support was also associated with less depression.21
High scores on the burden scale were associated with emotionally-focused coping strategies. Wishful thinking was shown to be positively correlated with burden (r=0.16), which confirms the Lazarus and Folkman theory (1984) that emotionally focused coping strategies are positively related to stress. A high burden is linked to depression and lower patient’s survival rates as caregivers are less available for the patient and so there is less patient-centred care showing that these two articles provide contradictory evidence.18
It was suggested that in the primary stages of the disease—when symptoms are mild—avoidance and denial may be useful in reducing the psychological burden on carers, but when symptoms are more intense this type of strategy ceases to be effective.18 More dysfunctional coping has been associated with carer depression, which may predict subsequent carer psychological morbidity in the Cache County Dementia Progression and the Malaga-AD studies.21 More dysfunctional coping predicted depression six and 12 months later. Conversely, some successful interventions counter-intuitively increased dysfunctional coping, but there are a lack of trials beyond six months.21
There were many limitations in the articles used. Articles one and three had problems with the blinding of the patients as blinding of the assessor and intention-to-treat analysis are not common practice in psychosocial research.17, 19 Although randomisation was independent and follow-up raters were blinded to allocation, the carers inevitably knew to which group they had been randomised.17 Article one was restricted by its lack of translation of the manual and lack of translators that affected four carers.17
Articles two and three were restricted by their study selections.18, 19 None of the retrieved studies in article three were specifically trials for cognitive reframing and the inclusion criteria involved an element of subjective judgement.19 The patients in article two were studies at different stages of their disease and selection was based on diagnoses and not clinical examination. There was also response bias because of the instruments using self-reports. The generalisability was also limited because of the possible self-selection bias in using volunteers.18 For article five there was a lack of trials with a follow-up beyond six months.21 All of these limitations mean that any conclusions drawn from this review must be treated with caution.
This review sought to investigate the effectiveness of coping strategies in helping carers of family members with Alzheimer’s disease with personal psychological distress. Four distinct coping strategies were found from the thorough literature search. Manual-based, positive approach and solution-focused coping were all generally seen to improve the psychological morbidity and distress of carers, whereas dysfunctional coping was seen to increase the incidence of depression. Articles two and five provided contradictory evidence regarding the benefit—if any—of emotional support and acceptance-based coping, hence more studies are needed to provide a definitive conclusion.18, 21
The overall effects of this review are that the benefit of different coping strategies were seen. Hence, these should be implemented into strategies aimed at improving the psychological health of carers. Article two concluded that nurses were in the best position to implement these strategies, but the different articles used different methods.18 A study is needed into who is best equipped to deliver such a programme efficiently and effectively.
There are various shortfalls within this review— such as sample size, problems with blinding, study selections and response bias. There was also no evidence of consideration of the rigour of the studies identified, which may affect the study’s results and no RCTs were eligible in article five.21 Hence, results must be treated with caution.
Furthermore, the inclusion/exclusion criteria were not very extensive and the use of only ‘full free text online’ may have led to some articles being missed. However the thorough search techniques used to search the databases should avoid this shortfall. Future studies should ensure they do not miss the opportunity to collect further evidence, and the use of all available articles should be considered.
This review has highlighted the difficulties faced by carers that is often overlooked, as well as the different coping strategies available. A reduced burden on carers has been shown to reduce care home admissions that leads to an increased quality of life for patients and a more economically viable country. However, there are many issues with blinding and there is no evidence regarding who is best to deliver such strategies, hence more in-depth studies are needed with longer term follow-ups.
Conflict of interest: none declared
Acknowledgements: I would like to offer my special thanks to my convenor Dr Ferran for his help during my SSM. I would also like to offer my thanks to Helen Owen Mackenzie and the team who assisted me in my visits to the Stein Centre, St Catherine’s Hospital.
- Alzheimer’s Society. What is dementia?. http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200360 (accessed 15/12/15)
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- Alzheimer’s Society. What is Alzheimer’s disease?. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=100 (accessed 15/12/15)
- Alzheimer’s Society. What is Alzheimer’s disease?. http://www.resourcesorg.co.uk/assets/pdfs/whatisalzheimersdisease_pdf.pdf (accessed 15/12/15)
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- Robert H. Pfister, MD. Effectiveness in Healthcare . https://www.vtoxford.org/quality/ebook/NICQ_2007_Chapter_3.pdf (accessed 15/12/15)
- Livingston G, Barber J, Rapaport P, et al. Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. 2013 www.bmj.com/content/347/bmj.f6276.long (accessed 15/12/15)
- Papastavrou E, Kalokerinou A, Papacostas SS, et al. Caring for a relative with dementia: family caregiver burden. 2007. http://eds.b.ebscohost.com.ezproxy.liv.ac.uk/eds/pdfviewer/pdfviewer?sid=a990a3b1-4e1f-4135-9abd-ff566b717f96%40sessionmgr113&vid=1&hid=114 (accessed 15/12/15)
- Vernooij-Dassen M, Draskovic I, McCleery J, Downs M. Cognitive reframing for carers of people with dementia. 2011; http://www.ncbi.nlm.nih.gov/pubmed/22071821 (accessed 15/12/15)
- Graham C, Ballard C, Sham P. Carers’ knowledge of dementia, their coping strategies and morbidity. International Journal of Geriatric Psychiatry 1997; 12: 931–36
- Li R, Cooper, C, Livingston G. Relationship of coping style to mood and anxiety disorders in dementia carers. Current Opinion in Psychiatry 2014; 27(1)
- Li R, Cooper C, Livingston G. Do changes in coping style explain the effectiveness of interventions for psychological morbidity in family carers of people with dementia? A systematic review and meta-analysis. Int Psychogeriatr. 2013; 25(2):204–14
- Kurz A, Wagenpfeil S, Hallauer J, et al. Evaluation of a brief educational program for dementia carers: The AENEAS Study. International Journal of Geriatric Psychiatry 2010; 25(8)
- Au A, Li S, Lee K, et al. The Coping with Caregiving Group Program for Chinese caregivers of patients with Alzheimer’s disease in Hong Kong. Patient Education and Counseling 2010; 78(2)
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- Select statistical services. The Importance and Effect of Sample Size. http://www.select-statistics.co.uk/article/blog-post/the-importance-and-effect-of-sample-size (accessed 15/12/15)