Introduction
In 2015, the number of people living with dementia worldwide was estimated at 46.8 million. This number is expected to increase to 74.7 million in 2030 and 131.5 million in 2050 (Prince et al., Reference Prince, Wimo, Guerchet, Ali, Wu and Prina2015). Dementia is often accompanied by neuropsychiatric symptoms (NPS). Dementia and the related NPS not only affect the quality of life of the person with dementia, but also result in a higher burden of informal caregivers and a lower quality of their lives (De Vugt et al., Reference De Vugt2003; Peeters et al., Reference Peeters, Werkman and Francke2012; Conde-Sala et al., Reference Conde-Sala2016). Dementia often leads to disability and a high and expanding need for care and support of a caregiver (Prince et al., Reference Prince, Prina and Guerchet2013). Overall, dementia is among the top five with the highest burden of disease for persons over 65 years and it belongs to the diseases with the highest burden for informal caregivers (McKeith and Cummings, Reference McKeith and Cummings2005). This burden includes physical, emotional, and economic aspects (World Health Organization, 2017). Furthermore, dementia is one of the most costly diseases worldwide (Prince et al., Reference Prince, Wimo, Guerchet, Ali, Wu and Prina2015; World Health Organization, 2017).
Higgs and Gilleard (Reference Higgs and Gilleard2017) plead for a shift to a more person-centered approach in dementia care: person-centered care (PCC). The shift from medical, routine-driven care to personalized, individualized care – regardless of the cognitive or functional capacity of the patients – is called ‘’the culture change’’ (Koren, Reference Koren2010). In 2016, the American Geriatrics Society Expert Panel developed a summarizing definition of PCC: “Person-centered care” means that individuals’ values and preferences are elicited and, once expressed, guide all aspects of their health care, supporting their realistic health and life goals. Person-centered care is achieved through a dynamic relationship among individuals, others who are important to them, and all relevant providers. This collaboration informs decision-making to the extent that the individual desires (AGS, 2016).
PCC can be enhanced by using a person's biography and memories (Clarke, Reference Clarke2000; Clarke et al., Reference Clarke, Jane Hanson and Ross2003). The use of written or oral life histories to improve psychological well-being is described as reminiscence and is often used with people with dementia (McKeown et al., Reference McKeown, Clarke and Repper2006; VandenBos, Reference VandenBos2006). Several (systematic) reviews have shown that reminiscence activities can contribute to the mental health and quality of life of persons with dementia (Woods et al., Reference Woods, Spector, Jones, Orrell and Davies2005; Subramaniam and Woods, Reference Subramaniam and Woods2012; Blake, Reference Blake2013). A recent meta-analysis of Huang and colleagues (Reference Huang2015) concluded that reminiscence therapy has a small effect on improving cognitive functioning and a moderate effect on reducing depressive symptoms in older persons with dementia, predominantly for those living in institutions.
The creation of a life story book (LSB) is a common approach in reminiscence (McKeown et al., Reference McKeown, Clarke and Repper2006). The use of LSBs with personal memories that are constructed together with the person with dementia is especially promising (Subramaniam and Woods, Reference Subramaniam and Woods2012). Besides the recollection of personal memories, receiving a tangible output in the form of a LSB is highly valued by patients (Morgan and Woods, Reference Morgan and Woods2010). In recent years, LSBs are used for multiple purposes and in multiple settings, while studies that evaluate LSB interventions for people with dementia are emerging. To provide an overview of how LSBs are used and what is known from research, we conducted a systematic review with two guiding questions:
1. How are LSBs used in dementia care?
2. What are the designs and findings of studies on the use of LSBs?
Methods
This systematic review was conducted according to the preferred reporting items for systematic reviews and meta-analyses statement (Moher et al., Reference Moher2015).
Inclusion and exclusion criteria
Population
This review concerns people with mild cognitive impairment (MCI) or dementia.
Types of interventions
Interventions that use LSBs were eligible for inclusion. There had to be a clear description of the LSB, and the LSB had to contain not only biographical facts but also autobiographical elements or memories.
Outcomes of interest
The outcomes of interest were (1) the use of LSBs and (2) the designs and findings of qualitative and quantitative studies on their use.
Types of evidence
In order to answer the two research questions, all empirical study designs were considered. Academic peer reviewed full-text papers published in printed or electronic format in academic journals or conference proceedings were deemed eligible for inclusion. No language restrictions were applied. Theses, book chapters, non-empirical studies, or unpublished work were excluded.
Data sources and search strategy
Academic databases Scopus, PubMed, and PsycINFO were searched. Additional sources included reference lists of relevant articles and reviews and expert consultation. In the search, strategy terms on “LSB” were combined with terms on dementia. All following terms were being searched in titles, abstracts, and keywords: “life story book” or “life story album” or “storybook” or “life album” or “memory book” or “memory album” or “reminiscence book” or “reminiscence album” or “biography book” or “autobiography book” or “life history book” AND “dementia” or “Alzheimers” or “mci” or “mild cognitive impairment”. Two authors (TE and GW) performed the last search run on October 19, 2017.
Study selection
The flow diagram of the search and selection procedure of studies is illustrated in Figure 1. Two data extractors (TE and GW) assessed the eligibility independently in a standardized manner. The 55 retrieved records from the search were screened by title and abstract. An interrater reliability check on the 55 articles was performed, resulting in an agreement of 98% and a Cohen's κ of 0.96, which is considered as ‘’almost perfect’’ (McHugh, Reference McHugh2012). The disagreement was resolved by consensus, in this case by excluding the article (since no LSBs were used in the intervention). After this first screening, a total of 33 full articles were assessed for eligibility. The extractors read these 33 articles independently. For this second round, the agreement was 91%, with a Cohen's κ of 0.82, which is considered as the upper bound of ‘’strong.’’ The remaining three discrepancies were resolved by consensus to exclude the articles (based on the third criterion of insufficient information about the LSB).
Figure 1. Flow diagram of the search and selection procedure of studies.
Data extraction
In order to answer the first research question How are LSBs used in dementia care? the following information was extracted from the articles: target group; type and characteristics of the LSB; implementation of the LSB; and time to create the LSB. To answer the second research question What are the findings of studies on the use of LSBs? the following factors were extracted: aim of the study; type of study; sample size; instruments and/or outcome variables; and findings.
Results
Study identification and selection
Figure 1 summarizes the databases hits, exclusion, and final inclusion in a flow diagram. A total of 70 records were found from Scopus (34), PubMed (22), and PsycINFO (14). Reference lists searches and expert consultation added seven studies. After removing duplicates, 55 studies remained and were screened for title and abstract. Based on title and abstract, 22 were discarded as the studies did not meet the inclusion criteria. The full texts of the remaining 33 studies were assessed for eligibility. Of these 33, 19 studies did not meet the inclusion criteria. Finally, a total of 14 studies met the inclusion criteria and were included in the systematic review. Out of the 14 included studies, 12 were identified through database searching.
Study characteristics
All 14 studies were empirical studies published in peer-reviewed journals or conference proceedings. The studies were published between 2003 and 2017. Ten of the 14 studies were conducted in the last five years between 2013 and 2017. In total, 243 persons with dementia participated in the studies.
Research question 1: How are life story books used in dementia care?
To answer this question, first, a general description of the different target groups and type and characteristics of the LSBs are presented in Table 1. Second, Table 2 shows descriptions of the implementation processes and the time needed to create a LSB.
Table 1. Overview of target group and type and characteristics of the life story book.
Table 2. Description of the implementation and the time needed to create a life story book
Target group
All included studies concerned people with dementia: Ten studies concerned people with mild to moderate dementia, one study very mild to mild, one mild to severe, one different stages, and one severe dementia. In the study of Crook et al. (Reference Crook, Adams, Shorten and Langdon2016), the participants suffered from mild to moderate dementia and had Down syndrome. A total of nine LSB interventions were carried out for individuals, whereas the other five were dyadic interventions. The mean age varied between 58.6 (Crook et al., Reference Crook, Adams, Shorten and Langdon2016) and 92.8 years (Andrews-Salvia et al., Reference Andrews-Salvia, Roy and Cameron2003). Eleven studies involved both men and women, three only women. The countries in which the studies took place where North Wales (two), United States (solely four; combined with Japan one), United Kingdom (three), Malaysia (two), Korea (one), and Northern Ireland (one). A majority of eight studies was performed in a care home setting, whereas three studies took place at the home situation and two studies in both settings. In one study (Hashim et al., Reference Hashim, Rias, Kamaruzaman, Zaman, Robinson, Olivier, Shih and Velastin2013), the setting was not clear.
Type and characteristics of the life story books
In eight studies, a tangible LSB was created. In three studies, both a traditional and another type of LSB was formed, namely a digital book (Ingersoll-Dayton et al., Reference Ingersoll-Dayton, Spencer, Campbell, Kurokowa and Ito2016), a rummage box (Crook et al., Reference Crook, Adams, Shorten and Langdon2016), and a pen picture (McKeown et al., Reference McKeown, Ryan, Ingleton and Clarke2013). In three studies, only a digital version was created: both studies by Hashim et al. (Reference Hashim, Rias, Kamaruzaman, Zaman, Robinson, Olivier, Shih and Velastin2013; Reference Hashim, Ismail, Rias and Mohamed2015) worked with a digital application and the study of Subramaniam and Woods (Reference Subramaniam and Woods2016) used previously constructed tangible LSBs as input to create a digital life story movie. A wide variation of materials was used to create the LSBs: photographs, music, narration, stories, blank pages, quotations, and news items. The order of the stories told in the LSBs, when known, was chronological. The length of the books varied from 2 pages (the pen picture) to 70 pages (Subramaniam et al., Reference Subramaniam, Woods and Whitaker2014). The average length of the movies of the Subramaniam and Woods (Reference Subramaniam and Woods2016) study was 18 minutes.
Implementation of the life story books
Both the participant and a partner or relative were involved in the process of creating the LSB in five studies. A professional caregiver was additionally helping in five cases. The participant created the book with the professional caregiver – so without a relative – in two cases and in the two remaining cases, it was the other way around: the participant was not involved in the process and the book was created by the relative and a professional caregiver. The researcher helped creating the LSB in the study of Andrews-Salvia et al. (Reference Andrews-Salvia, Roy and Cameron2003) and in the control condition of the Subramaniam and Woods study. In five studies, Haight's life review model or life review experience form (LREF; Haight, Reference Haight, Jones and Miesen1992) was used in the sessions to create the LSB. A total of four studies used the couples life story approach (once combined with techniques from Haight). The number of sessions involved in creating a LSB varied from 3 (Subramaniam and Woods, Reference Subramaniam and Woods2016) to 16 (Subramaniam et al., Reference Subramaniam, Woods and Whitaker2014) with a median of six sessions, while the amount of weeks it took ranged from 9 days (Crook et al., Reference Crook, Adams, Shorten and Langdon2016) to 12 weeks (Morgan and Woods, Reference Morgan and Woods2010; Subramaniam et al., Reference Subramaniam, Woods and Whitaker2014) and the time per session variated between 15 minutes (Hashim et al., Reference Hashim, Ismail, Rias and Mohamed2015) and 120 minutes (Ingersoll-Dayton et al., Reference Ingersoll-Dayton, Spencer, Kwak, Scherrer, Allen and Campbell2013). No information was found about actual use, e.g. whether it has been used daily or weekly, for how long, and by whom, of the LSBs after the process of creating it.
Research question 2: What are the designs and findings of studies on the use of life story books?
To answer this question, the main characteristics of the study designs (aims, types of studies, and sample sizes) are presented in Table 3. Table 4 shows the instruments and/or outcome variables used in the studies and presents the findings (qualitative and/or quantitative) of the different studies.
Table 3. Overview of study characteristics
Note: - = missing data.
Table 4. Overview of instruments and findings
Aim of study
The aims of the studies can be divided into two main categories: (1) getting insight in the challenges and possibilities of implementing LSB interventions in dementia care by evaluating the process and (2) gaining (initial) evidence on the effectiveness of the LSB interventions on participants (e.g. on autobiographical memory and quality of life and mood) and/or their (in)formal caregivers (e.g. on relationship and burden). Seven studies focused on the first aim, three on the second aim, and four had a combination of both aims. Hence, there were 11 studies with the first aim and seven with the second aim in total.
Type of study
The 11 studies that evaluated the implementation process used a multiple qualitative case study (three), single case study (two), case-study vignette (three), or another qualitative approach (three). Regarding the seven studies that examined the effectiveness of the LSB interventions, two multiple baseline designs and five (preliminary) (randomized) controlled trial designs were used. Four of these studies compared the LSB intervention to care as usual or no treatment. Of those four, one study compared a LSB with both a no intervention and a rummage box condition (Crook et al., Reference Crook, Adams, Shorten and Langdon2016) and another had the following three conditions: (1) life review work carried out separately – but simultaneously – with the person with dementia and the caregiver; (2) life review carried out with the caregiver alone; and (3) an untreated control group (Haight et al., Reference Haight, Bachman, Hendrix, Wagner, Meeks and Johnson2003). The fifth controlled trial study compared a co-creation of a LSB with receiving a LSB as a gift (Subramaniam et al., Reference Subramaniam, Woods and Whitaker2014). Participants were randomly assigned to the conditions, except for the Haight et al., Reference Haight, Bachman, Hendrix, Wagner, Meeks and Johnson2003 study, for which it remains unclear whether allocation was random.
Sample size
The sample sizes ranged from 1 (the case studies) to 56 (multiple case study; Kwak et al., Reference Kwak, Ha, Hwang, Ingersoll-Dayton and Spencer2018). For the controlled trials, the average sample size was 20 (with a range from 5 to 31). In four studies, only the persons with dementia were involved in the study, in nine studies informal caregivers, formal caregivers, or other staff were part of the study, and in one study, it was unclear.
Instruments/Outcome variables
A large number of different instruments or outcome variables were used. A distinction can be made between qualitative and quantitative measurements. To explore the implementation process of the interventions, qualitative instruments, such as (semi-structured) interviews, observations, open questions, conversations, and field notes, were used. To assess the effectiveness of the interventions, multiple questionnaires and observational instruments were used on different stakeholders. Participant-focused outcomes were, e.g. autobiographical memory, depression, and quality of life. Furthermore, questionnaires on the quality of the caregiving relationship and communication between the informal caregiver and person with dementia were assessed. Informal caregiver measures were on caregiver burden and formal caregiver measures were on knowledge and attitudes. The outcome measures in the controlled trial studies were applied on baseline as well as during the intervention (Crook et al., Reference Crook, Adams, Shorten and Langdon2016) or after the intervention with a maximum of 18 weeks (Subramaniam et al., Reference Subramaniam, Woods and Whitaker2014).
Findings
Qualitative findings
All those involved looked back on the interventions as an enjoyable process and they viewed a LSB as a useful tool triggering memories and – largely positive – emotions. Participants, relatives, and care staff saw the value of the LSB mainly in improvements in relationships: partner affirmation, engagement, fullness of life as a couple, social interaction, and communication. Furthermore, several (cultural) themes were identified and recommendations for implementing a LSB intervention were given, e.g. on how to incorporate difficult life events in the LSB, how to tell a mutual story, and how to end the story. No negative effects were reported.
Quantitative effects
In the five controlled trial studies, the LSB interventions showed significant improvements in autobiographical memory, mood, depression, and quality of life of the persons with dementia compared with care as usual or no treatment. Furthermore, the communication and quality of relationships between participants and their informal caregivers improved significantly. Finally, significant improvement on staff attitudes and knowledge was found. In one study, two reminiscence intervention conditions (one being a LSB intervention and the other a rummage box) showed significant improvement compared to the no intervention condition, but no difference was found between the LSB condition and the rummage box condition (Crook et al., Reference Crook, Adams, Shorten and Langdon2016). Moreover, some positive non-significant changes in independence and behavior problems in favor of the LSB intervention were reported (Haight et al., Reference Haight, Gibson and Michel2006). One study reported a mixed outcome: the persons with dementia in the dyadic LSB condition showed a significant decrease in cognition compared to the caregiver only and no treatment condition, while mood and burden improved in both the dyadic and caregiver only condition (Haight et al., Reference Haight, Bachman, Hendrix, Wagner, Meeks and Johnson2003).
Discussion
Reminiscence can be used to enhance PCC and has proven to be effective for persons with dementia (Woods et al., Reference Woods, Spector, Jones, Orrell and Davies2005; Subramaniam and Woods, Reference Subramaniam and Woods2012; Blake, Reference Blake2013; Huang et al., Reference Huang2015). The creation of a LSB is a specific form of reminiscence that is the result of a life review process that illustrates the biography of a person. This systematic review of 14 studies showed that most LSBs were tangible books that were created in about six individual sessions in nursing homes with persons with varying degrees of dementia as well as with their informal and formal caregivers. Process evaluations showed the value of LSBs in triggering memories and positive emotions and in improving the relation with the person with dementia. Quantitative evaluations supported this value as significant improvements were found on autobiographical memory, depression, mood, and quality of life of the persons with dementia, as well as on the quality of relationships and communication between the person with dementia and the informal caregiver. Furthermore, effects on burden of the informal caregivers and on attitudes and knowledge of formal caregivers were found in comparison to care as usual.
The findings for persons with dementia are in line with earlier reviews and a meta-analysis that have shown that reminiscence activities can contribute to cognitive functioning, depression, and quality of life of persons with dementia (Woods et al., Reference Woods, Spector, Jones, Orrell and Davies2005; Subramaniam and Woods, Reference Subramaniam and Woods2012; Blake, Reference Blake2013; Huang et al., Reference Huang2015). The findings for caregivers and their relation to persons with dementia indicate that LSBs can contribute to the culture change towards more PCC (Koren, Reference Koren2010; AGS, 2016; Higgs and Gilleard, Reference Higgs and Gilleard2017). The relationship between persons with dementia and their formal and informal caregivers appears to be improved and the expression of values and preferences of persons with dementia in LSBs can further contribute to support their health and life goals. This also aligns with previous findings that reminiscence has the potential to enable care staff to see the person behind the patient and enable the patient's voice to be heard, verbally and non-verbally (Woods et al., Reference Woods, Spector, Jones, Orrell and Davies2005).
According to the framework for trials of complex interventions created by the Medical Research Council (MRC, 2000), the research on LSBs is ranged between the phase of modelling and the phase of exploratory trails (phase I and phase II). The use of LSBs and the qualitative studies provides insight in the components and underlying mechanisms of LSBs (phase I). The main mechanism is the recollection and sharing of autobiographical memories. The components are an individual or dyadic life review that results in a tangible (digital) life story. The quantitative studies in this review apply to the exploratory trial phase (phase II). In this phase, the components are tested in different designs. Small sample sizes and non-random allocation of participants are characteristic for this phase. Despite the fact that the majority of the controlled trials in this review were randomized, we need to interpret the significant improvements found on several outcomes in this review with caution, especially due to the small sample sizes.
The next phase (phase III) would be to conduct larger randomized controlled trial (RCT) studies to establish the effects of LSBs on people with dementia. This phase asks for a good choice of intervention characteristics in relation to outcome measures. Given the diversity in aims and methods of the included interventions, it is hard to state one as the best practice at this moment in time. Hence, when conducting a larger trial, a clear formulation of the aims of the LSB intervention and how the specific components contribute to the aims is necessary.
Overall, the research in the field of the use of LSBs in dementia care is in the first phases of providing evidence. However, one has to realize that research on LSBs in dementia care is a fairly new area of interest, hence the lack of good, solid RCTs with large sample sizes. Given the current state, the small RCTs, pilot studies, and qualitative case studies of this review do provide insights and help future research.
This review shows that an intervention may focus more on the person with dementia and try to improve autobiographical memory, mood, depression, and/or quality of life or, alternatively, focus more on the relationships of (in)formal caregivers with the person with dementia. The process of creating a LSB may be different for both purposes, for example, in terms of the persons who are involved in the process, or in the use of individual forms like Haights LREF (Haight, Reference Haight, Jones and Miesen1992) versus a dyadic approach like the couples life story approach (Ingersoll-Dayton et al., Reference Ingersoll-Dayton, Spencer, Kwak, Scherrer, Allen and Campbell2013). Technology might contribute to the first aim due to multimedia effects like music or movies that may more strongly involve the person with dementia in the process of recollecting memories and improving mood. Technology might contribute in another way to the second aim as different persons can contribute to the creation and use of digital LSBs more easily, also making the LSB more interactive. Is it only after conducting good trials that the last phase (phase IV) of long-term implementation can be realized?
This review is the first to provide an overview on the use of LSBs as a specific domain within the field of reminiscence in dementia care. The studies included were diverse in their aims and consequently in their methods, which makes it difficult to compare the studies in a consistent way. However, the diversity does show that creating LSBs needs to be a tailored process. Especially in a time when the need for more PCC is greater than ever, one could question whether there is one golden standard since it always will be a personal, individualized process to create one's life story. Nevertheless, it is worthwhile to investigate the effect of personalized LSBs on larger studies.
Since 12 of the 14 included studies were identified through database searching, it is assumed that the constructed search strategy was sufficient and all relevant studies were identified. The majority of studies in this review report on positive findings or effects, although some studies do mention less positive outcomes. Failed attempts on studies on LSBs may not have been published. This systematic review shows indications of effects of creating LSBs and possible ways to implement LSBs in dementia care, but information on their actual use after the creating process and long-term effects after implementation is lacking.
This systematic review shows that research on LSB interventions for people with dementia is emerging and confirms that the use of LSBs to support reminiscence and PCC is promising.
Conflict of interest
None.
Description of authors’ roles
T. Elfrink and G. Westerhof formulated the research questions and were the data extractors of this review. T. Elfrink analyzed the data and wrote the article with supervision and feedback from G. Westerhof, M. Kunz, and S. Zuidema. All authors provided comments and read and approved the final manuscript.
Acknowledgments
This research was supported by a grant from ZonMw, Alzheimer Nederland, & PGGM. Contract grant number: 733050610.
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