Activities delivered at home by family carers to maintain cognitive function in people with dementia socially isolating during COVID-19: Evidence for Non – technology based activities / interventions
May 7, 2020
Mari Lloyd-Williams, Caroline Mogan, Sarah Russell, Karen Harrison-Dening
Academic Palliative and Supportive Care Studies Group, University of Liverpool
On behalf of the Oxford COVID-19 Evidence Service Team
Centre for Evidence-Based Medicine, Nuffield Department of Primary Care Health Sciences
University of Oxford
Correspondence to firstname.lastname@example.org
- There is a small body of evidence to suggest that activities delivered at home by family carers may have some positive effects on cognition (and mood)
- All activities should be tailored to meet the individual needs and preferences of people with dementia, in order to ensure all activities are engaging and enjoyable.
It is estimated that there are 850,000 people living with dementia in the UK and 46.8 million living with dementia world-wide. Most people with dementia will be older and particularly vulnerable to severe morbidity and mortality with COVID-19. Over 70-year olds have been advised to self-isolate which is challenging for all people but particularly challenging for those with dementia living with family carers or living alone with family carer support. There are a large array of Apps and other technology-based activities but nearly a third of people over 65 do not have internet access. Additionally the reliance of technology based apps to support family cares of those with dementia excludes those living in rural and remote areas where internet access is intermittent and those living in more socioeconomically deprived areas where access to internet based activities are not possible due to financial constraints.
There is concern to maintain cognitive function in dementia as deterioration can lead to further morbidity, increased carer distress and potentially lead to older people with dementia having to enter residential care and lead to increased costs for health and social care budgets
People with dementia frequently access groups offering diversional activities and may access day centres offering a range of activities aimed to promote cognitive well-being, leaving family carers of those with dementia requesting information on which activities they themselves can deliver to promote cognitive function.
The aim of this rapid review is to establish the evidence for which non-technology based activities that can be delivered at home by family carers, are effective in maintaining cognitive function in people with dementia who are socially isolating during COVID-19
We found very few studies where family carers were trained / supported to deliver an intervention within the home environment, the vast majority of interventions were delivered by clinicians or researchers within a care home setting; when community settings were included these were frequently day care services or interventions being delivered as part of a group based activity
Reminiscence therapy (RT) is based on evocation and discussion about past activities, events and experiences, using a variety of supporting materials. It includes the recall of past events with the use of music, photographs and other aids, often prepared with the involvement of carers. Authors have noted a key distinction between reminiscence work that is based on sharing stories and memories from the past in a group, which has a narrative and informative function, and that which has a focus on the individual making sense of their own life story, which is described as having an integrative function.
A recent Cochrane review reported that whilst there was only a small benefit on quality of life and cognition immediately following RT delivered to people with dementia in care homes, there was a slight benefit on depression scales associated with individual RT when compared with group RT. An earlier review also found a small body of evidence to suggest that carrying out individual RT, culminating in the production of a life story book, is associated with improvements in cognition and well-being. Less personalized one to one reminiscence work, which does not use memory triggers (such as photographs that are of specific relevance to the person) has little benefit. This highlights the importance of tailoring the activity to the interest of the person with dementia.
Although much of the evidence to date is based on small scale studies on people with dementia in care homes, there may be some benefit to conducting reminiscence work with people with dementia who are currently isolating at home. This could be adopted in an inexpensive manner (e.g. by using familiar and meaningful objects from around the persons home). However, future research is needed to examine the role of carers in this process.
Cognitive stimulation therapy
Cognitive stimulation therapy (CST) is an intervention for people with dementia which includes a range of activities providing general stimulation for thinking, concentration and memory and although usually delivered as part of a group can be delivered individually by family carers. A Cochrane review reported that CST benefited cognition in people with mild to moderate dementia but not those with more severe dementia. In the few studies where family carers were involved they did not appear to report increased strain or burden. Whilst these results are promising, it has been suggested that benefits may be linked to the fact that group cognitive stimulation encourages participants to give their opinions and engages participants in an optimal learning environment, usually with the social benefits of a group.
More recently home-based programmes of individual cognitive stimulation therapy (iCST) delivered by family caregivers have been developed. A randomised controlled trial (RCT) included 356 people with mild to moderate dementia and their caregivers found that while there was no evidence that iCST has an effect on cognition or QoL for people with dementia, participating in iCST appeared to improve the quality of the caregiving relationship and caregivers’ QoL. Consequently, cognitive stimulation activities (such as word games or a practical activity e.g. following a recipe) could also be considered by those people currently isolating at home in order to maintain positive relations.
Music based interventions
There has been considerable interest in music interventions and dementia. Broadly speaking, these interventions can be classified either as music therapy, which is implemented by a trained music therapist and follows an established protocol, or as other music-based interventions, comprising musical activities implemented by other professionals (e.g. nursing staff), the person themselves, or family caregivers (such as music listening, singing, instrument playing, and dancing).
A Cochrane review on music therapy for people with dementia in care homes reported that while it may improve emotional well-being and quality of life and reduce anxiety, it has little or no effect on cognition. However, there is emerging evidence that music-based interventions performed outside a formal music therapy context can have potential benefits for cognitive functioning. Studies have revealed that pleasant and stimulating background music can temporarily reduce anxiety as well as enhance awareness, and cognitive performance in tasks of episodic (autobiographical) memory and verbal fluency. Evidence from RCT studies also indicates that listening to music listening regularly and frequently, can support cognitive functioning, mood, and QOL in mild-moderate dementia.
Although we could not find any trials of home based music therapy interventions, a meta-analysis of music based interventions for people with dementia reported that they did not have any adverse effects, suggesting that they would be a safe intervention for carers to consider during this period of self-isolation. Currently an international trial is in progress to determine the effectiveness of music therapy delivered by family carers within the home.
Art therapy is defined as a “therapeutic process based on spontaneous or prompted creative expression using various art materials and art techniques such as painting, drawing, sculpture, clay modelling and collage” (Avrahami, 2006, p. 6). A recent Cochrane review of art therapy for people with dementia concluded there is insufficient evidence to draw any reliable conclusions about its efficacy, however some smaller studies have found that art therapy engages attention, is enjoyable , and improves neuropsychiatric symptoms, social behaviour, and self-esteem. As a result, people with dementia and their caregivers who are currently isolating at home could consider arts-based activities as a non-invasive distraction method that may have some positive short-term effects. However, more rigorous studies are needed to determine its long-term effectiveness on cognition function.
The term “meaningful activity” is commonly used in the dementia care literature. Evidence indicates that for an activity to be “meaningful” it should have three features. These are active participation, activity content related to the interests and past roles of the participants, and activities that meet the basic psychological needs of identity and belonging. Hence, meaningful activities include a wide variety of leisure and recreational activities, household chores, social involvement and work-related activities.
A systematic review found that providing meaningful or individualized tailored activities for people with dementia living in care homes appears to be effective for a range of symptoms. The strongest evidence was for individualized activities/recreational interventions for a range of behavioural and psychological symptoms of dementia; preferred music for depression and anxiety; and Reminiscence Therapy for mood and cognitive functioning. Importantly, significant effects were found when the interventions were conducted by care home staff indicating that interventions can be delivered by formal or family carers and be effective.
A synthesis of qualitative studies regarding the perspectives of people with dementia on meaningful activity revealed that those who engaged in intellectual, physical, and leisure activities (e.g., reading, doing crossword puzzles) believed that these activities would improve memory and restore their abilities. They also found that keeping an active mind, being physically active, and maintaining health and well-being were of great value to produce a sense of improved well-being. Furthermore, people with early stage dementia who engaged in leisure activities did so to keep busy, which helped to reduce loneliness and distract themselves from being socially isolated. The authors concluded that caregivers should help persons with dementia continue engagement in personally meaningful activities, by better understanding the person’s want and need for engagement in activities and identifying varied ways of being connected in a personally meaningful way.
Non-technology-based interventions for persons living with dementia in care settings have shown some positive outcomes in maintaining or improving cognition (and mood) and reducing behavioural symptoms. However, the evidence for home-based interventions is very limited and with very few studies and methodological weaknesses, particularly in relation to small sample sizes, the heterogeneity of the patient groups (i.e., dementia of several aetiologies) and difficulties in carrying out post-treatment assessments ‘blind’ to treatment condition. Details of randomisation were also sometimes lacking.
The evidence highlights that engaging people with dementia in activities that they find enjoyable or those that link to past work/hobbies can be helpful in giving a sense of purpose and meaning during this time of isolation. Furthermore, non-technology based interventions may have some practical advantages for those currently isolating at home since they are inexpensive and do not require extensive training.
All sources of evidence used in this review are available via the hyperlinks
Professor Mari Lloyd-Williams is Professor and Director of Academic Palliative and Supportive Care Studies Group , University of Liverpool and Honorary Consultant in Palliative Medicine at Liverpool Marie Curie Hospice and Honorary Consultant Liverpool CCG – Liverpool Health Partners
Caroline Mogan is ESRC funded Doctoral Fellow Academic Palliative and Supportive Care Studies Group , University of Liverpool
Dr Sarah Russell Practice Development Facilitator Dementia UK and Visiting Fellow University of Southampton
Dr Karen Harrison-Dening is Head of Research Dementia UK and Honorary Research Associate Academic Palliative and Supportive Care Studies Group, University of Liverpool