The Influence of Life Story Books in Dementia Care

Inhalt

Abstract

Background

Rationale

Intervention

Literature Review

Objectives

Organizational Analysis of Project Site

Theoretical Framework/Evidence Based Practice Model

Project Design

Implementation Plan/Procedures

Measurement Instruments

Data Collection/Analysis

Results

Conclusion

Conclusion

References

Abstract

Background:Knowing a person’s biography and life experience is crucial in care planning and care delivery for people living with dementia and for understanding unmet needs of those unable to express themselves. This study explores the use of life story books as an effective intervention in developing person-centered care practices that increase quality of life for individuals living with dementia in a long-term care facility.

Objectives:The purpose was to pilot the feasibility and impact of an 8-week life story book intervention and examine how a personalized life story book (LSB) can enhance quality of life, improve cognition and facilitate the provision of person-centered dementia care for nursing home residents living with dementia.

Methods: A pretest–posttest within-participants design was used to measure quality of life and cognitive status. An in-depth literature review was done to explore best practices in the use of life story books in caring for people living with dementia and then develop and implement a pilot study for a single-arm life story book intervention on five study participants.

Results. The use of life story books can be an integral part of a person-centered dementia care program. While neither test was significantly improved over the 8 week pilot, cognitive status did show some improvement. Further research is needed to establish best practices in the creation of life story books, protocols for use in care planning and the implementation of a life story book intervention program.

Keywords: life story, reminiscence therapy, dementia

Background

Over 6 million persons in US are living with dementia and this number is expected to grow to over 16 million by 2040, (Alz Assoc, 2017). Dementia is associated with negative outcomes such as decreased perception of quality of life, increased risk for falls, pressure ulcers, weight loss and challenging behaviors, (Capstick et al., 2007). As there is no cure for dementia, healthcare organizations have an obligation to meet the challenges of providing dementia care for residents by developing interventions based on best practice research and innovations in dementia care.

This article will describe the foundations and development of life story work (LSW), its usefulness in the provision of person-centered dementia care and discuss how life story books in particular are an effective intervention for dementia care. Life story books can be an integral part of a holistic approach to dementia care as it includes collaborating with the family, friends and caregivers of a person with dementia to learn details about their life to better understand, interact and care for them (McKeown, 2010).

Dementia is an umbrella term for a cluster of progressive brain disorders that disrupt a person’s ability to think, reason and care for themselves. As dementia progresses, an individual’s short-term memory deteriorates but many long-term memories and life experiences remain (Savica & Petersen, 2011). Alzheimer’s disease (AD) is by far the most common cause of dementia, followed by vascular dementia, Lewy Body dementia and frontotemporal dementia (Prince, 2008). As the dementia progresses over time, decreases in cognition and physical strength or abilities will make it more problematic for persons with dementia to make themselves understood, communicate their wishes, make choices or understand their present circumstances (Kindell, et al., 2014). Besides the communication issue, another concern for residents living with dementia are the complications associated with negative outcomes attributed to dementia, such as; challenging behaviors, falls, withdrawal, aggression and exit seeking (Capstick et al., 2007). With no medical cure in sight for dementia, providing care that enhances the quality of life and reducing comolications of the person living with dementia is essential (Alz Assoc, 2017).

Among the numerous treatments developed for people living with dementia, the most cited and apparent is life story work (Marshall & Hutchinson, 2001). Life story work (LSW) means to thoroughly assess information regarding the biography of the person in need of long-term care, document this information, discuss it with interdisciplinary team members, interpret and contrast it against current care, and develop and implement individualized person-centered care interventions to meet psychosocial as well as physical care requirements and address unmet needs (Berendonk et al., 2016).

The philosophies and guidelines for the basic principles of life story work (LSW) were influenced by the work of Tom Kitwood (1997), who challenged the belief that dementia leads to a loss of who the person is. Kitwood came up with a model that encourages care providers to think outside the perspectives of the “patient” and what “task” is needed for their care, by getting to know the care recipient as a “person”. He suggested that care staff appreciate the person and consider their entire life story and personhood, rather than observing, assessing, and treating them purely based on their diagnosis of dementia. Kitwood (1997), defined personhood as “a standing or status that is bestowed on one human being, by others” and it “implies recognition, respect and trust”. Kitwood’s concept of providing person-centered care (PCC) encompassed a range of characteristics, such as valuing the person, understanding the life story of the person and building and supporting relationships that will ensure high-quality care and improve quality of life (Matyr, et al., 2017).

The Institute of Medicine (IOM) describes person-centered care as one of the key goals in improving our health care system and “to live well” should be defined by personal perceptions of the quality of life and their “comfort, function and contentment” (IOM, 2012). Person-centered care is regarded as a necessary method to ensure quality outcomes in the delivery of health care (Maslow, 2013). Baldwin (2009), suggests that the preservation of personhood should be central to any person-centered care principle. The major benefit of person-centered care is its core and central focus on “seeing”, knowing and understanding the individual (Clark, 2003). A person-centered approach to care involves learning more about a person’s life story to find meaning and understanding of the person’s past experiences and needs (McCormack 2004).

In his influential book “Dementia reconsidered: the person comes first”, Kitwood (1997) documented the need to uphold the personhood of people living with dementia and noted that the life story of a person “becomes essential if that identity is still to be held in place” (Kitwood, 1997: p.56). People living with dementia need to retain their own exceptional life history, communicate that experience to others and then have the right to assume that their self-identity and dignity are appreciated, respected and maintained (Heggestad and Slettebø, 2015). Both Kitwood and Roach et al., (2014), have suggested that the way to keep a person’s identity is through the documentation, knowledge and use of the person’s life story.

Life story work (LSW) is an assessment of a person using a psychotherapeutic technique commonly used in social work interventions with children and in dementia care interventions for older adults. Life story work has been defined as “a term given to biographical approaches in health and social care settings that gives people time to share their memories and talk about their life experiences” (McKeown, et al., 2006). It is a structured approach to documenting and understanding the details of a person’s life to empower them and their care psrtners to develop strategies to deal with difficult aspects of their past and present and provide positive memory triggers that encourage enjoyment and self-identity. The various formats of LSW include memory boxes, scrapbooks, movies, collages, photobooks and more.

Rationale

An assessment of life story work in dementia care by McKeown et al. (2006), found that the use of life story had a significant impact on care delivery. In the last twenty years, life story work has gained acceptance as a dementia care best practice (Haight et al., 2003; Keady et al., 2005; Kellett et al., 2010). The need for life story work is especially evident in long-term care (LTC) facilities, as residents with dementia account for over 60% of the census in most long-term care facilities (Alz Assoc, 2017). Numerous studies reveal that providing evidence-based dementia care practices in LTC facilities produces favorable clinical and quality of life outcomes (Testad et al., 2014). Yet, there is often a significant delay between research evidence and practice change and attempts at changes in care are frequently not successful (Rahman et al., 2012). For example, even though many long-term care providers have sought to encourage concepts of person-centered care and organizational culture transformation and those efforts are becoming prevalent in long term care facilities, it is not clear whether the application efforts are altering staff and facility-wide practices, nor whether these modifications to practice are enhancing care or improving resident outcomes (Shier et al, 2014).

In 2016, the Center for Medicare and Medicaid Services (CMS) implemented a policy that requires that long-term care (LTC) facilities provide ‘‘person-centered care’’ by learning more about who the resident is as a person. One of the main goals of the policy is to further CMS’s mission of improving person-centered care (PCC) in long-term care facilities (CMS, 2012). To accomplish that, many changes were made to the policy to strengthen understanding around residents’ rights, care goals, and preferences. The revisions were published in a “final rule” that became effective on November 28, 2016. This “final rule” policy revised long-standing requirements that LTC facilities must meet to participate in the Medicare and Medicaid programs. These changes were necessary to reflect the substantial advances that have been made over the past several years in the theory and practice of service delivery and safety. These revisions are also an integral part of the Center for Medicare and Medicaid Services efforts to achieve broad-based improvements both in the quality of health care furnished through federal programs and for patient safety, while at the same time reducing procedural burdens on providers.

CMS has thus mandated that facilities place an emphasis on care for residents living with dementia and ensure that the resident’s “voice and choice” are incorporated into the care delivery (Fed Reg, 2016). The CMS rule require facilities to “learn more about who the resident is as a person, provide greater support for resident preferences and give residents increased control and choice”. This focus on person-centered care and culture change would improve both the resident’s quality of life and quality of care. The policy added that ‘‘person-centered care’’ be defined as focusing on the resident as the locus of control and supporting the resident in making their own choices and having control over their daily lives (Fed Reg, 2016). The implication is that “person-centered care and culture change would improve both the resident’s quality of life and quality of care”. Section §483.21 of the final rule provides directives for “Comprehensive Person-Centered Care Planning”. This policy requires facilities to develop and implement a baseline care plan for each resident, within 48 hours of their admission to provide effective and “person-centered care” that meets professional standards of quality care.

The regulation stipulates the facility must make a comprehensive assessment of a resident’s needs, strengths, goals, life history and preferences, using the Resident Assessment Instrument (RAI) specified by CMS. Unfortunately, the RAI and Minimum Data Set (MDS) used for comprehensive assessments and care planning does not include information such as resident’s strengths, goals and life history. CMS mandates person-centered care planning based on life history, yet gave no guidance nor tool to accomplish the requirement. Providing a simple and effective tool to to meet that goal was fundamental to this project.

In relating the psychological needs a person living with dementia, Kitwood (1997) emphasized the need to have an understanding of the person’s life story to “allow the identity of a person to be maintained”. Likewise, Brown et al. (2001) advocates that for person-centered care to apply, it is vital to “know the person”. The value of life story work in delivering person-centered care (PCC) has been identified by Bruce and Schweitzer (2009) as helping understand the meaning behind what people are trying to say, understanding challenging behaviors and facilitating interaction and relationships.

Intervention

Of the various types of life story work that have been practiced, the making of a life story book seems to be most effective (Sub & Woods, 2012). Life story books were originally used to help create a sense of identity for children who had experienced repetitive troubles in parenting relationships and living arrangements, or were fostered or adopted (Gibson, 2004; Ryan & Walker, 1997). Since then, the process has been used for people with intellectual disabilities (Hewit, 2000) geriatric depression (Plastow , 2006) people receiving palliative care (Lester 2004) and people living with dementia (Haight et al., 2006).

Creating a life story book involves working with a person living with dementia and their family and/or friends to document their life history with the goal of using it to affect the care they receive in the present (Gridley, et al., 2016, Kellett, et al., 2010). Life story books usually contain written accounts in the subject's own words, photographs of significant people and places, and other personal documentation. The subject of the life story is often involved in developing a chronological pictorial and documentary account of their life. The creation of a life story book can be a significant component in a person’s uniqueness, self-identification and in the promotion and preservation of self (Surr, 2006).

Knowing the life story of a person living with dementia is very important when the person needs assisted or long-term care. Life story books are particularly useful in transitional care situations, when a move to a long-term care facility can present numerous challenges for a person living with dementia, as it is a significant departure from their usual life, and this may result in feelings of loneliness and obscurity, loss of identity and seclusion (Heliker & Jaquish, 2006). An organizational culture of listening to and a thoughtful, empathetic understanding of a life story can inspire a caring environment for residents living in or transitioning to a long-term care (LTC) facility (Heliker, 2007). A life story book can be used by the LTC staff to decrease the anxiety of a transition and build a trusting relationship through a holistic view of the resident’s identity and needs (Clark, et al., 2003 & Nolan, et al., 2004).

This pilot study dealt with the challenges of enhancing quality of life for residents living with dementia by developing person-centered dementia care interventions based on LSW research. The primary intervention modality for the study was the use of a life story book to provide an understanding of the resident’s psychosocial history and develop comprehensive care plans and individualized care approaches that would enhance the quality of life, reduce anxiety and promote self-identity. Care staff would use a life story to support people living with dementia through an understanding of their life and this may improve the quality of care they provide (Berendonk et al., 2011; Buckley, McCormack, & Ryan, 2013; McKeown, Clarke, & Repper, 2006).

Literature Review

A systematic review of research literature was done to advance a theoretical model of life story books, define probable outcomes and identify theories of change and best practice approaches for the intervention. The search strategy involved electronic review of databases covering the fields of health, mental health, nursing and social care, using a combination of indexing terms such as medical subject headings (MeSHs) in MEDLINE and free-text search terms in the title and abstract. The search strategies center on the retrieval of published studies as well as “grey literature” where the interventions are termed as life story, life review or reminiscence therapy within the title or abstract. Inclusion criteria included studies that evaluated or revealed the theoretical underpinnings of life story work (LSW) and the utilization of life story books (LSB) with people living with dementia. The reference lists of the included studies were reviewed for any pertinent additional studies. Exclusion criteria included opinion pieces, letters, and any article published before 1995 or not in the English language.

The abstracts of 128 articles were reviewed to determine if life story was used as an intervention or described in any interactions between LTC residents living with dementia and staff, researchers, or therapists. The search identified 15 studies published during 2000–2018 that were used in this study. Most of the studies described how life story books were used in structured sessions that were conducted for limited periods, some had suggestions that the biographical information was used in care planning, but few descriptions on how it was used in routine daily care. This review evaluated the creation and use of life story books and if the use of the books as an intervention attained enhanced perceptions of quality of life or increased cognition in LTC residents living with dementia.

The review revealed that the predominant outcomes in the use of life story work (LSW) included; LSW supports the self-worth and empowerment of people with dementia (Azcurra, & Luis, 2012), LSW positively affects anxiety, depression, agitation, mood and behavior (Kellett, 2010), LSW leads to better person-centered care (Russell, 2009), LSW allows more effective relationships between residents, family and staff (Buron, 2010 and Clark, 2003) and LSW helps care staff to cope better (Sub., et al., 2014). For the most part, the literature suggested that life stories generally had a positive influence on the persons with dementia, their relatives, and staff (Buron, 2010 and McCormack, 2004). Life story books allowed the voice of persons living with dementia to be “heard and to feel proud about themselves and their lives” (McKeown, et al., 2010).

Life story work has been used in long-term and community care facilities for nearly thirty years and there has been increasing awareness in its potential to enhance person-centered care for people living with dementia (McCormack, 2004). A study by Haight (2006), verified that after a life story book intervention, residents with mild to moderate dementia scored significantly higher on the outcome scales of cognition, depression, quality of life and communication than the control group.

Kellett et al. (2010), found that when staff knew the residents life story achievements and experiences, they were able to prompt positive memories which benefited the resident by reducing anxiety and challenging behaviors. Furthermore, life story books provided positive long-term memory triggers that could be used to promote both verbal and non-verbal communication and interactions with the person living with dementia and view them in relation to their unique family history and past experiences. Care staff that have understanding and insight into why a resident might exhibit a certain behavior, felt empowered to provide more person-centered care rather than the usual “task-oriented” care (McGilton, et al., 2007). Sub. & Woods (2014), found the staff attitudes, compassion and empathy for persons living with dementia improved when a life story book was created by the resident or their family and used in practice.

The combined and synthesized results from the articles and studies show that use of life stories can contribute to “maintenance of the person with dementia as a whole person rather than a demented patient” (Clark, 2003). The review provided a correlation to the study assumptions that the use of a life story book is consistent with one of the main goals of dementia care and often referred to as “seeing the person beyond the dementia” (McKeown, et al., 2010). The findings from these studies reveal that life story books improve staff satisfaction, attitudes and knowledge of resident needs, enhance person-centered care, and improve families’ perception of their relationship with the person living with dementia (Testad, et al., 2014). The studies provide validity for the need for the continued development and use of life story books to enhance dementia care practices. The process of integrating reminiscence sessions with the life story books also appears to provide a best practice, evidence-based intervention to support perceptions of quality of life and well-being with people living with dementia (Azcurra & Luis, 2012).

The research supports the benefits of using life story books over “treatment as usual”, adding new evidence-based approaches to our prevailing knowledge of the utility of life story, life review and reminiscence work (Haight et al., 2006; Azcurra & Luis, 2012, Morgan & Woods, 2010). The review of studies showed that life story books provide opportunities for care staff, activity professionals and family members to use the books as a part of daily care activities and interactions to maintain, or even enhance the QoL, cognitive function and general attitude of the person living with dementia.

The literature review revealed that life story books are an effective intervention for dementia care, yet there was little consensus on the best way to construct a life story book, use it in practice, nor what biographical details should be included in it. There were suggestions of elements that should be contained in a life story book, including photographs, postcards, birth/marriage certificates, timelines, newspaper clipping, brochures, business cards, stickers and more (Clark, 2006). Most life story books were organized together with the person living with dementia, their family or friends, usually by looking through memorabilia and photos while discussing their life history (Batson et al. 2002, Clarke et al. 2003).

Although it would seem apparent that having the subject participate in the book creation, families should be encouraged to develop life story books for their loved ones that may be unable to assist in the process. Study findings by Morgan and Woods (2010), support the hypothesis that the life story book is an effective intervention, even without the assistance of the subject of the story. That study showed that life story books arranged by family members without the resident’s participation were also associated with improved QoL over the study period. Although the collective studies did not describe an ideal way of using or constructing a life story book, they did produce a range of data and the underpinnings of the concept.

Life story books as an intervention is different from reminiscence therapy and ‘biographical work’ because it stresses using the life story book in daily care to improve communication, and develop trusting relationships through an understanding of the individual’s past life, and their orientation to the present and future. Life story books can be kept with the resident when they travel or go to an unfamiliar place and effectively ease the transition to other care settings, (Russell & Timmons, 2009). A life story book was found to be an important element in the provision of person-centered dementia care.

Objectives

The prerequisite to facilitate the practice of “Person-Centered Care” (PCC) was a central aspect of this study. A life story book (LSB) is a tool that helps promote a model of person-centered care that embraces the importance of knowing and appreciating the life and history of the individual (Gates et al, 2013). The objective of the program was to perform a qualitative study of experiences of using life story books for residents living with dementia to determine if the use of a life story book intervention is linked with enhanced perceptions of quality of life and cognition.

The aim was to establish fundamentals of using life story books in a long-term care facility and enhance person-centered care approaches for residents living with dementia. The author provided instruction on life story books and person-centered dementia care practices that improve functional capabilities and increases the sense of well-being and quality of life. The training helped care staff understand how to integrate life story books as a tool that allows a thorough and thoughtful understanding of residents with dementia and encourages the development of relationships and the delivery of holistic, person-centered care (Trieber, 2012). The life story book was used to improve communication, knowledge and understanding of their past life and apply it to present day care needs.

Organizational Analysis of Project Site

The pilot site was a 150-bed long-term care facility with a 24-bed secured unit that specialized in caring for residents living with dementia. A preliminary interview with the staff at the site facility revealed the caregivers felt they needed additional dementia education. Caregivers expressed the need for training in intervening appropriately and skillfully with residents exhibiting challenging behaviors. Several of the facility care staff expressed they were uncertain about the triggers of challenging behaviors among residents and the adverse effects of medications used to treat dementia. Inappropriately managing the behaviors can lead to suffering for both patients and caregivers (Moos & Bjorn, 2006). In addition, persistent challenging behaviors can increase distress among other residents resulting in an escalation of behavior symptoms among the entire facility (Dettmore, et al., 2009).

One of the most difficult problems faced by care staff and residents living with dementia is dealing with the negative outcomes attributed to dementia, such as; confrontational, aggressive and challenging behaviors, falls resulting in injury, anxiety, depression, emotional withdrawal that diminishes quality of life, impedes care and increases the risk of exit seeking. Because of the stress on other residents and staff that often accompanies disruptive or challenging behaviors, nursing staff tend to focus on pharmacological or re-directional interventions that only mask the unmet need or unresolved conflict, instead of interventions that mitigate expressions based on those root causes and promote self-esteem and identity (Haight, et al., 2006). The pilot study implementation plan included using life story books as a non-pharmacologic intervention to reduce these negative events. A thorough understanding of a resident’s life story may mitigate certain behaviors, help resolve unmet needs and increase perceptions of quality of life (Thompson, 2011).

Application of non-pharmacologic behavior management interventions has been shown to enhance clinical outcomes in long term care facilities, including; return to hospital rates, falls, elopements, resident quality of life (QoL) and staff satisfaction (Deudon et al., 2009; Teri et al., 2009; Testad, Mikkelsen, Ballard, & Arsland, 2010). A life story book is a non-pharmacological intervention designed to be integrated into the facility’s dementia care training program to help mitigate challenging behaviors, produce better quality measure outcomes, increase staff morale and retention through alleviation of adverse behavior events and incidents related to dementia (Testad, et al., 2014).

Section 6121 of the Affordable Care Act requires Center for Medicare/Medicaid Services (CMS) to ensure that long-term care facility staff receive regular training on how to care for residents with dementia. CMS guidance (CMS, 2012) states that person-centered care is an approach to care that focuses on residents as individuals and supports caregivers working most closely with them. Concepts of person-centered care were emphasized in CMS’s “Hand in Hand” dementia care training (CMS, 2012) the staff received.

The study pilot used a constructivist approach to build on the knowledge base of the staff. Each of the facility staff had received at least 6 hours of the “Hand in Hand” dementia care training as part of their orientation and annually. To ensure an adequate dementia care knowledge base to build on, the facility staff development coordinator (SDC) provided re-education as requested and as needed prior to implementation. The author then provided a training session on how to use the life story book and led discussions on person-centered care concepts, with an understanding that every patient is a unique person with distinct needs and concerns.

Care staff participated in training sessions on how to use a patient’s life story in approaches, communications and interactions with the resident and if necessary, the life story book for challenging behavior interventions. The training described how life story books benefit the patient, family and nursing staff when it is used on a regular schedule and in communications with the resident. They learned to consider those negative behaviors as expressions of unmet needs or unresolved conflicts and use that knowledge to provide more person-centered care.

The author provided commentary on his experiences of how life story books worked in actual practice. Examples included details of a resident who was frequently found on the floor next to his bed, another that exhibited anxiety and exit seeking behaviors nearly every afternoon and yet another that wandered the halls nightly attempting to get into other resident rooms. When the life stories of these particular residents were reviewed it was clear the reasons behind their actions. The first resident was formerly an automobile mechanic and so it was likely that he was simply getting down on the floor, so he could get under his “car” (actually the bed). The second resident used to be an elementary school teacher, so perhaps she was getting her pupils ready to go home. And finally, the last resident was a security guard and he was quite used to night shift duty, checking the “offices” of the building he worked at. Simply knowing this information provided a foundation to develop meaningful interventions that met the needs of each without medications nor anxiety causing attempts at redirection. This anecdotal evidence helped frame the concepts being taught as it was relevant to many of the residents they cared for. The discussions turned to what activities and approaches the staff would have used for each case and soon they were accomplishing the intent of the training, using life story to provide person-centered care.

As noted by Melnyk (2015), integrating evidence-based research into clinical practice is a challenging task. One of the most critical components of this program was to validate the training of the care staff so they could properly implement the life story book intervention. The staff were tasked with describing and then reflect on what they learned through open debriefing to provide an formative assessment of the students’ clinical thinking skills through facilitated reflection and discussion (Cheng, 2014).

Theoretical Framework/Evidence Based Practice Model

The purpose of the study was to validate current research and to determine if using life story books was associated with higher levels of quality of life and enhanced cognitive status in residents living with dementia. The sample was five (5) residents with moderate to severe dementia related to Alzheimer’s disease, living in secured unit of in a 150-bed nursing home. The aim of this evidence-implementing (Bonnel & Smith, 2014) project was to apply extensive, high-quality life story work research while establishing protocols for using life story photobooks as the primary intervention to enhance dementia care practice.

The study utilized a framework advocated by Rycroft-Malone (2004) that suggests three steps to implementing evidence into practice. Simply put, there needs to be an understanding of the evidence, a supportive culture throughout the organization and skilled mentors to teach the concepts. Staff skills in life story work were developed using this simple framework. There was participation and support of all stakeholders in the planning, application and assessment of the life story book as a tool to enhance dementia care which was key to the success of the study.

Project Design

A pretest–posttest within-participants design was used to measure quality of life (QoL-AD) and cognitive status (BIMS), with a systematic review of the literature for best practice for the use of life story books and implementation of a pilot reminiscence program using a life story photobook as the main intervention, culminating with a summative outcome’s analysis utilizing pre and post program interviews with residents to explore experiences of the life story photobook as a dementia care best practice.

Due to logistical restraints, the pilot was a quasi-experimental design study that lacked random assignments and no control and comparisons groups. The strength of the study is that it aligned well with the desire of all stakeholders to enhance the care and quality of life for the residents with dementia. In addition, the outcome of the study revealed that stakeholders felt they had benefited from a humanizing, holistic and person-centered understanding of the person living with dementia.

Identification of a phenomenon of interest for a quality improvement project such as using life story books to improve dementia care is the simplest part of the project’s change process. Putting the concept into practice was much more challenging, so utilizing Lewin’s and Lippit’s theories of change (Kaminski, 2011) helped with those challenges and served as a practical guide for the project study. The Western Carolina Internal Review Board (IRB) approval was obtained prior to initiating the study.

Implementation Plan/Procedures

Recommendations from the reviewed studies were used to design a questionnaire that would provide details on the life story. The life story photobooks were created using a web-based publishing program to ensure relevant biographical data that stimulates enjoyable memories was incorporated and certify standardization of the photobooks. The facility’s Director of Nursing (DON) and Activities Director (AD) staff contacted the family representatives of all the residents living in the secured unit of the long-term care facility. Several accepted the invitation to attend an information session at the facility, along with family, staff and researchers. Information on the research study, survey forms, website and tutorial to publish the book and schedule plan were reviewed and discussed by the researchers, family representatives, residents and staff.

To provide uniform consistency with the life story book intervention, a web-based, photobook publishing platform that offered a template specifically designed to build a life story photobook for persons living with dementia was selected. The author had the site built to provide a simple, but structured resource to create life story books and has an ownership interest in the website, which was disclosed to study participants and their representatives. The costs associated for the books was provided by the author. The finished book included large photo spreads with smaller photographs and descriptive text imbedded on the pages. Each book had the same faux leather cover with the resident’s name embossed on it and each was limited to 24 pages or 12 two-page spreads which provided space for photographs up to 24” x 9”, so they could be easily seen by the resident. A completed life story book and a monitor showing the website used to compile the books was available for viewing during the presentation.

The tutorial recommended that a life story photobook should have photos from at least six categories: 1. Life achievements, (education, work experience, military service, sports), 2. Family, friends and pets, (names and relationships, both current and past). 3. Memories of home, (with details of the most significant memories). 4. Significant positive memories, (marriage, children, places visited, family stories, books, movies). 5. Life-long habits (activities of daily living, bedtime, favorite foods/beverages) and 6. Passions, hopes and dreams.

There was also the suggestion that if possible, have the person whose story is being told participate in the process. The subject of the story may describe milestones, important events, achievements that made them feel proud, happy or even funny moments and other stories that help form their life story and would be relevant to delivery of person-centered care. It was stressed to keep the memories positive and not to discuss negative or painful memories and when adding a photo of home, to remember that “Home” may be the place they lived as a child, the last place they lived or the home from raising a family. A person with memory loss may not recognize themselves, family or friends in recent photos, so a recommendation was made to use photos of earlier times to enhance their recall. And finally, there were discussions on providing information on the person’s activities of daily living needs to help care staff understand better their unique personal preferences and lifelong daily habits as well as describing any hopes, dreams or aspirations, which are positive aspects of a person’s life story and good memory triggers (Kindell, et al., 2014).

Six residents and their family representatives agreed to participate in the project. An information pack with consents, life history questionnaire, website brochures and contact information was provided. Support was offered to all representatives and subsequently provided in that the photographs and detailed biographical information form was used by the author to publish their life story books on the web-based platform. One resident’s representative was unable to complete the forms and was dropped from the study.

Prior to the start of the study the five remaining study participants were interviewed by the facility Social Worker using the Brief Interview of Mental status (BIMS) assessment form to rate cognitive status and then by the Activities Director using the Quality of Life – Alzheimer’s Disease (QoL-AD) assessment survey to rate perceptions of quality of life. The life story books were published and sent directly to the facility. The books were then used by the facility’s interdisciplinary team (IDT) to review and revise each residents care plan to integrate information gleaned from the life story book and questionnaire. This review produced an individualized and person-centered care plan which was shared with care staff.

The staff reviewed the revised care plans of the subject residents and were informed of the specific care needs and potential unmet needs of each of the study participants. There were discussions on verbal and non-verbal communication of residents with dementia and how these communications and behaviors may essentially be efforts to express desires, pain and needs. Staff learned how to use the revised care plans and life story photobooks in initiating daily activities and interventions with the residents living with dementia. The knowledge of the resident’s life story was to be used in all approaches and interactions to promote effective and compassionate communication, determine unmet needs, mitigate behavioral challenges and promote a sense of identity.

Each study subject had weekly, individualized reminiscence sessions by having a staff member sit alongside them and look through the book, attempt to engage in actual conversation or non-verbal communication by reviewing each photo and reading the descriptive text to illicit responses and trigger positive memories. This weekly session lasted between 15 and 30 minutes for the 8-week study. Individualized reminiscence work, using a life review or life story books, shows latent benefits for residents living with dementia. The benefits of reminiscing with a life story book included enhanced perceptions of quality of life, improvements in disposition and cognition, decreases in stress and anxiety and improvements in self-esteem, memory and socialization skills. The staff also used the books in daily interactions with the residents and when discussing care needs at shift change and care planning conferences.

After the study subjects had access to and attended reminiscence sessions with their life story photobook for 8 weeks, QoL-AD and BIMS assessments were repeated. The researcher also sought feedback from the study subject, their relatives, and care home staff about the life story photobook intervention, including the consistency of its use and the perceptions of satisfaction by the residents, families and staff.

The program concluded after 60 days with a summative outcomes analysis and medical records review to determine the effect of the intervention on quality of life and cognitive status.

Measurement Instruments

Specific measurement tools included the Quality of Life – Alzheimer’s Disease (QoL-AD) tool, which has been shown to be valid and reliable tool to measure quality of life (QoL) for people with mild to moderate dementia (Bowling et al., 2015), and the Brief Interview for Mental Status (BIMS).

QoL-AD: Measures dimensions of quality of life (QoL) relative to a resident’s experience and physical condition: comfort, functional competence, privacy, dignity, autonomy, ability to participate in meaningful activities, relationships, food enjoyment, spiritual well-being, security, individuality and perceptions of self and quality of life Thorgrimsen et al. (2003). Logsdon (2002), devised the QoL-AD, a 13-item scale for gauging QoL in people with Alzheimer’s disease. The QoL-AD may be completed by both residents or caregivers. It includes assessment of physical health, mental health, social and financial domains and an overall QoL rating. Thorgrimsen et al. (2003), concluded the scale was a reliable and valid tool, which could be reasonably used to rate QoL in residents with mild to moderate cognitive impairment.

BIMS: In 2010, CMS revised the federally mandated process for clinical assessment of all residents in Medicare and Medicaid certified nursing homes. This Minimum Data Set (MDS) 3.0 process provides a comprehensive assessment of each resident’s functional capabilities and helps nursing home staff identify health problems. MDS 3.0 included the Brief Interview for Mental Status (BIMS), a short performance-based cognitive screener for nursing home (NH) residents. The BIMS was specifically designed to facilitate cognitive screening in MDS assessments. In studies by Saliba, et al., (2012), the BIMS performance-based assessment approach was more highly associated with a standard cognitive screening test and demonstrated greater accuracy than the MDS 2.0 Cognitive Performance Scale (CPS) it replaced. The MDS 3.0 was intended to improve the federally mandated assessment process of nursing home residents through several mechanisms. One is that it incorporates the patient’s voice by requiring interviews with residents with scripted questions to assess subjective states such as cognitive functioning (MDS, 2010). The designers of the MDS 3.0 suggested that having residents involved in the assessment process would promote person-centered care and improve the accuracy of reporting subjective states such as pain, mood, and cognition. (Saliba & Buchanan, 2012). The MDS 3.0 added the Brief Interview for Mental Status (BIMS), as a short performance based cognitive screener expressly designed to facilitate cognitive screening (Saliba, et al., 2012). For residents who are deemed unable to participate in this standardized cognitive screener, or unable to complete the interview questions, their cognitive functioning is assessed by nursing staff using standardized instructions. Findings from a national evaluation of the MDS 3.0 suggested over 95% of residents were able to complete the BIMS (Saliba, et al., 2012).

Data Collection/Analysis

The rating of the scales was conducted by independent raters composed of a registered nurse and a social worker, while processing of the data was completed by an independent statistics expert. Data analyses was performed using SPSS 23.0 for Windows. To determine whether the patients in the intervention group experience changes in their quality of life and social interactions, a within-subjects paired t-test was conducted following a pre-intervention, post-intervention design. Scores were compared across time at T0 (pre-intervention) and T1 (post-intervention at 2 months). Effect size was calculated (Cohen’s dz) and sample size estimation was conducted using G*Power 3.1.9.2.

To assess whether QoL-AD and BIMS scores reliably changed over time at the level of each individual, we computed the Reliability Change Index (RCI) scores. To determine RCI, we obtained normative reference data of reliability from Thorgrimsem et al. 2003 on QoL-AD (Cronbach’s alpha = 0.82, standard deviation = 5.8) and Mace et al. 2016 on BIMS (Cronbach’s alpha = 0.77, standard deviation = 3.62). RCI scores greater than 1.96 are representative of a significant change of p<0.05 within a given subject. We hypothesize that outcome is that using a life story approach will result in some promising effects for the promotion of well-being and quality of life in people with dementia.

Results

The mean time between the QoL-AD pre and post measurement was 62.2 (0.5) days and 91.8 (21.4) days. Sum QoL-AD scores were similar between baseline and follow-up (33.3 (2.3) vs 32.9 (1.9), p=0.613). Sum BIMS was improved over time, but did not reach significance either (4.8 (6.1) vs 6.8 (5.5), p=0.103).

Individual test score changes (RCI) in QoL-AD or BIMS did not reach a significance level of z=1.96 for any of the participants. The median z-score of individual change was -0.11 (interquartile range: -2.000.81 – 1.090.44) for QoL-AD, and -0.16 (interquartile range: -1.15 – 0.63).

While neither test was significantly improved over time, BIMS did show some improvement over time (mean change of +2). We conducted power analysis to determine the required sample size to reach p<0.05 in a paired t-test. In our current sample, the effect size of the observed improvement of BIMS over time was dz=0.94. At this effect size level, a sample size of 17 pairs would be necessary to detect a statistically significant change with 95% power.

Conclusion

The purpose of this study was to investigate whether using life story photobooks is associated with higher levels of quality of life and improved cognition for long-term care residents with dementia. The analysis of the outcome measures did not support the hypothesis. However, the review of available research, expert opinions, anecdotal case commentary and reflection of the residents, families and care staff made it clear that knowing the life history of the person living with dementia makes an improvement in those relationships and empathetic delivery of care.

Findings from the literature review suggested that compiling a life history and creating a life story book, is associated with improvements in cognition and well-being. Findings from the pilot study provided support for the feasibility of integrating life story books into dementia care practices of long-term care facilities. The main research contribution of the study was in providing tools, guidelines and protocols for the development, creation, and application of life story books as an intervention to enhance dementia care. This information will be beneficial for any long-term care facility’s attempts to meet CMS final rule requirements for “Comprehensive Person-Centered Care Planning” based on a residents life story and meet professional standards for quality care (Fed Reg, 2016).

The strengths of the study was that the theoretical framework applied, and life story book tools used, aligns well with person-centered principles. Enhancement in QoL is attributable not only to the type of treatment employed but to the intricacies of the communication process between the resident and the care staff. The pilot site facility had the knowledge of the resident life story as well as the compassion and empathy to provide the intervention. In addition, the facility’s highly skilled personnel, were trained and certified in dementia care and had a clear understanding of the study goals, with a focus on quality improvement.

The corporate owner of the pilot site facility has a full research department and an entire division devoted to developing dementia and behavioral care programming. They understood that person-centered care requires culture change and were dedicated to transforming all their 115+ facilities into true person-centered “homes” that provide long-term care services. A culture-change movement with a goal to provide person-centered care intrinsically compels a facility to deliver high-quality, individualized, and not institutionalized care, for residents “in a setting that maximizes self-determination and well-being” (Fazio, et al., 2018). Life story books can facilitate those laudable goals.

From a purely humanistic perspective, the predominant and most meaningful outcome of the study was the feedback and responses from the residents that received the life story books and the staff that used them in their everyday practice. The staff reported that books did indeed trigger positive memories and made the residents “feel good”, which in turn made for a more positive environment. The researchers notes revealed much the same, documenting that the residents had very positive verbal as well as non-verbal responses and gestures in response to reviewing the books. The care staff testified that their sentiments and opinions of the residents were changed when they knew more about the residents. They said that the residents past experiences explained some of the challenging or repetitive expressions and provided a basis for communication.

Several staff admitted that it made them feel “closer” to the residents and treated them more like family or someone they knew and not someone they are obligated to care for. Family members reported their heartfelt satisfaction for the opportunity to “celebrate” the life of their loved one when compiling the photographs and answering the questions needed to create the life story book. They reported feeling “better” about their relationship with the staff after sharing the life story book with them and observing who they used the knowledge in practice.

Additional research conducted over longer time periods and using larger sample sizes, randomized design and controlling for the comorbidities’ and other variables is needed to effectively validate previous research that life story books are effective tools to help deliver person-centered care for residents living with memory loss or dementia. More research is necessary on how to make life story books a part of standard clinical practice and be integrated into organizational culture. As the staff who participated in the study expressed enjoyment and gratitude for the pilot program, it would be beneficial to study the effects of life story book programs on staff retention and satisfaction.

Conclusion

The use of life story books in this study allowed residents living with dementia the opportunity to share their life story and past accomplishments and experiences with family, staff and other residents. Research revealed that a life story book intervention seems to be a dependable and beneficial option for residents living with dementia, and with potential to effect their quality of life. Life story interventions showed improvement in quality of life and suggested that changes were related to concepts of personhood, consolidation of self-identity and a higher sense of self. Knowing the resident as person and not a patient should be the normal practice in any healthcare setting.

To know them - is to better care for them.

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