Memory Keeper: A prototype digital application to improve engagement with people with dementia in long-term care (innovative practice)

Abstract

People with dementia living in long-term care commonly experience loneliness and lack of meaningful activity. Memory Keeper is a prototype digital application that presents personalised prompts to stimulate reminiscences and meaningful engagement with formal and informal carers. A trial involving three persons with dementia in long-term care and seven family and staff members revealed no negative responses to the device or application. Family members said it was valuable in improving the quality of engagement and made visits more enjoyable. If practical and technical barriers can be overcome, Memory Keeper could become an innovative family engagement tool for dementia management.

Keywords

dementia digital application engagement nursing person-centred care

Introduction

People with dementia living in long-term care settings commonly experience loneliness, boredom and lack of meaningful activity (Cohen-Mansfield, Dakheel-Ali, Marx, Thein, & Regier, 2015). Reminiscence-based activities are commonly used to address these problems. This involves encouraging the person to recall and discuss memories by activating the senses with music, objects and images to trigger memories (Cuddy, Sikka, & Vanstone, 2015).

In care settings, reminiscence is typically facilitated by staff as a group activity (Astell et al., 2010). Reviews have highlighted the potential benefits of group reminiscence activities on mood, wellbeing, behaviour and autobiographical memory (Huang et al., 2015). In relation to one-on-one activities, a systematic review of activities that used personalised activities, such as co-constructing a life review or story book, may lead to improvements in wellbeing, mood, cognition, memory and quality of life (Subramaniam & Woods, 2012). But one-on-one activities may be used inconsistently if staff and family are time-poor or are lacking confidence with the strategy.

Wellbeing-based technology is diversifying and there is some evidence that its use in long-term care settings can enhance quality of life (Lazar, Thompson, & Demiris, 2014). One example is the CIRCA programme, which uses a touchscreen to present themed prompts in various formats to engage persons with dementia (Astell et al., 2010). In Australia, use of such technology is not yet widespread and tends to be restricted to staff use.

The ‘Memory Keeper’ is a prototype digital application created by the authors that uses smart technology (an Apple iPad©) to present personalised prompts to the person with dementia in order to stimulate reminiscences. We assumed that family and visitors may want to provide more meaningful support to the person with dementia, and that formal caregivers may benefit from innovations that enhance humanising interactions, but which are also durable and easy to use.

Thus, the ‘Memory Keeper’ app was designed for use by formal and informal carers and aims to enhance the wellbeing of the person with dementia by supporting carers’ engagement with the person.

The research team worked closely over a six-month period with the families of two persons with dementia living in long-term care, to develop the Memory Keeper. Artefacts, such as family photographs, music and video clips, book covers, a series of images on various themes such as work, leisure, pets and food were collected during these interactions in order to populate the app with trigger material that would hopefully become talking points that would engage the person with dementia and also introduce care staff to that individual’s life story. Essentially, we developed the Memory Keeper as an engagement tool for person-centred care in dementia.

Once built, the prototype was evaluated in a pilot study with individuals with moderate to advanced dementia, exploring (1) barriers and facilitators to Memory Keeper’s use with persons with dementia in a long-term care facility, (2) the benefits (or otherwise) of the application when used in this setting and (3) the potential use and incorporation of Memory Keeper within the care currently provided in this setting.

Method

Participants, setting and study design

The trial was conducted within the dementia wing of a long-term care facility from November 2015 to April 2016. Participants in the trial were three residents with dementia (identified in this paper by initials that have been changed to protect their identities), and their six significant others (P1–P6). The Lifestyle Coordinator of the facility (P7) also participated. Ethics approval for the research was granted by the University Ethics Committee (A/13/455).

Recruitment relied on a purposeful sample of potential participants identified by P7 as residents with dementia with significant others who were involved in the care of the person and who might be interested in participating in the trial. P7 first approached these family members either in person at the care facility or by telephone. The families of four residents with dementia were willing to participate. One resident died during the trial, leaving three persons with dementia and six of their family members who completed the trial (Table 1). Participants provided written informed consent and informed consent for the persons with dementia was provided in writing by the closest family member.

Table 1.

Participant characteristics of the persons with dementia in the trial.

Participant	Age (years)	Length of residency (months)	Main prior occupation	Significant others	Diagnosis and capacity
HT (male)	83	14	BP Oil superintendent	P1 (wife)	Lewy body diseaseLewy body disease results from neuron degeneration and death. In addition to symptoms of dementia, this disease is commonly associated with visual hallucinations, Parkinsonism (tremors/stiffness similar to Parkinson’s disease) and fluctuations in mental state (i.e. between lucidity and disorientation). Disease progression is generally more rapid than Alzheimer’s disease. HT can respond to verbal cues and move independently, and occasionally tries to communicate/speak (not always comprehensible); however, his condition varies from day to day.
RX (female)	76	18	Housewife, church involvement	P2 (husband)	Alzheimer’s disease:Associated with short-term memory loss followed by long-term memory loss as neuronal degeneration and death spreads to deeper parts of the brain; when other causes have been ruled out, Alzheimer’s disease may be diagnosed. While RX can respond to verbal cues, her condition is severe and her disease has likely progressed to the middle or late stages.
RN (male)	87	27	Optometrist	P3 (ex-partner)P4 (friend)P5 (brother)P6 (son)	Dementia (non-specified):RN’s dementia may be alcohol related; however, a diagnosis has not been made. He can be conversational, although has experienced high levels of cognitive loss and great difficulty adapting to his new environment in the residential setting.

Setting up the Memory Keeper

Family members were given training on how to populate the Memory Keeper. These consisted of personal or stock photographs, book and music album covers, newspaper clippings, music, movie clips and family movies. After Memory Keeper was ready for use, the participants were given individualised training on how to use the Memory Keeper with their loved one.

Data collection and analysis

Trial coordinator (P8) field notes (recording peoples’ reactions and interactions to the intervention), focus groups and one individual interview were conducted during the trial. Data from these sources were combined into one document and a Framework Analysis was used to produce summary charts to reveal patterns in the data, connections between concepts and overarching themes (Gale, Heath, Cameron, Rashid, & Redwood, 2013).

Results and discussion

Five overarching themes, including subthemes and concepts, were produced (see Figure 1, Tables 2 and 3).

Figure 1.

Themes from focus groups.

Table 2.

Framework analysis findings: Themes 1 and 2.

Theme 1: Benefits of Memory Keeper

For person with dementia

• Memory aid: supports executive and long-term memory;^a* ^,b* captures meaningful media/memories^a,b,c

• Repository: central location of media;^a**,b fulfils need to document and record;^b*

• Physical: improve physical safety;^b* maintain or use physical function;^a**,b,c discover capacity of person^b

• Cognitive and emotional: fulfils emotional needs;^b** extends attention span;^a*,b

• Family and friends visit more frequently^b*

• Valuable before moving into residential care^a*,b,c

For family and friends

• Visits: conversational stimulus;^a** extends visits;^a visits more interesting and enjoyable;^a** access to inner person^b

• Relationship with person with dementia: supports understanding of person;^a**,b supports relationship^a**,c

• Coping with own aging: supports own reminiscence;^a prepare for unknown future^a

• Tangible way to ‘help’: feeling they are helping person^a*,b

• Extended family: aggregate media for family;^a engage grandchildren^a

For staff and institution

• Help provide better care (person-first care);^b view person with dementia as a person not a problem;^b supports institutional person-first care culture;^b* supports institutional partnership with family^b*

For others

• Older members of the community who don’t have dementia could participate;^a* meaningful occupation or hobby^a,c

Theme 2: Engagement with and response to Memory Keeper by person with dementia

Responses of person

• Responses in common: no negative responses (RX, RN, HT), MK either captures attention or person is disinterested/distracted and looks away (RX, RN, HT);^a** tapping to music (RX, RN);^a** singing along (RX, RN);^a* smiling/other facial expression (RX, RN, HT);^a** trying to recall and say names and other details (RN, RX);^a**

• Engagement and engaging media in common: engagement and responses depend more on the ‘day’ and condition of the person than on the app use (RN, HT);^a* music previously enjoyed by person;^a†— old photos from childhood and as a young adult (RN, RX, HT);^a**,b short clips of familiar ‘classic’ movies (RN, HT)^a**,b

• Engagement and less engaging media in common: externally sourced media (RX, HT);^a**,c less engaging media not always predictable, even by lifetime spouse (RX, HT)^a**

• HT unique aspects: standing up and inviting wife to dance;^a touching or holding the screen/image;^a** engagement with externally sourced media from childhood and early adulthood depends on narrative provided by spouse;^a**,b**,c more recent photos of holidays and travel less engaging^a,c

• RX unique aspects: whole body response;^a,b photos of own family/children engaging;^a,c disengaged if too long spent on MK activity^a*,b,c

• RN unique aspects: responses limited due to medication;^a** photos of own family/children confusing but not necessarily unengaging;^a photos that don’t include RN are less engaging

MK: Memory Keeper.

Note: ^a: mentioned by family member/friend; ^b: mentioned by staff member; ^c: mentioned by researcher; *: mentioned by two people or twice by one person; **: mentioned 3–5 times by one or more people; ^†—: mentioned seven times by four people.

Table 3.

Framework analysis findings: Themes 3 and 4.

Theme 3: Challenges and facilitators for media collection, Memory Keeper set-up, training and handover

Recruitment challenges

• Timing concurrent with school holidays and Christmas;^c* gaining access to participants through institution;^c* illness or deterioration of person;^c family perceiving involvement too demanding^c

Media collection challenges

• Access: personal media lost, damaged or thrown out;^a*,c desired external media not available;^c family/friend not able to provide specifics^c*

• Time consuming: gathering personal and external media;^a*,c** collecting stories^c

• Organisation of media: unprepared for reminiscence by media and medical advice;^c MK/playlists hard to conceptualise^a**,c

Media collection facilitators

• Family and friends already engaged in photo collecting and reminiscing: photo albums already created;^a**,b,c** media already digitised^a*,c*

• Engaged family and friends: access to people who have been around for most of the person’s life;^c** family/friends visiting regularly;^c family/friends enthusiastic and willing to contribute^c

• Internet access: facilitated collection of external media;^b following up interviews via email^c**

Media transfer and set-up challenges

• Media transfer: ongoing transfer after initial set-up;^c* transfer of music from Apple^© devices^c**

• Unlabelled media: playlist set-up more difficult^a**

Media transfer and set-up facilitators

• Person having identifiable interests^c

Training and handover challenges

• Age and memory: hindered learning for family and friends^a**,c

• Lack of confidence with technology^a

Training and handover facilitators

• Providing paper-based instruction manual^a**

Theme 4: Challenges and facilitators for use of Memory Keeper in the residential care setting

Person with dementia challenges

• Condition of person: person drowsy or sedated;^a†—,c deterioration of person’s condition^a

• Technology skills and familiarity with device^a

Family and friends challenges

• (sole) informal carer: time consuming and draining;^a*,c** lack of support network^a*,b,c

• Age, memory and health of family and friends^a**,c*

• Technology: skills and familiarity;^a*,c confidence^a*

Family and friends facilitators

• Prior familiarity with device^a*,c

• Visiting with MK is enjoyable^a*,b

• Personalised support: understanding the person’s need for, and facilitating, repetition;^a* repetition of familiar photos on display in room^a*

Staff and institution challenges

• Incorporating MK into usual care: technological skills and familiarity;^ab* time constraints;^a demonstrating efficacy to time-poor staff;^b practical application^b

Staff and institution facilitators

• Increasing digital familiarity over time^b

• Environmental: embedding MK within existing processes;^b* creating a model environment for others;^b providing a charging station^a

Device and application challenges

• Logging in and out of administrator mode: recording a reaction;^a causing confusion;^c accidentally resetting app^c

Device and application facilitators

• Easy to use and access: MK intuitive and easy to use;^a**,c iPad^© easy to access and charge^a*

• Usefulness: practical;^a,c can provide content tailored to needs of person^a**

• Device properties: good size;^a**,b hard to damage (protective case supplied)^a**

MK: Memory Keeper.

Note: ^a: mentioned by family member/friend; ^b: mentioned by staff; ^c: mentioned by researcher; *: mentioned by two people or twice by one person; **: mentioned 3–5 times by one or more people; ^†—: mentioned seven times by two people.

The most important findings within these themes are discussed below, complemented by verbatim quotes extracted from the transcripts.

Experienced and expected benefits of Memory Keeper

Many benefits were experienced or perceived for the person with dementia, their family, the staff and the setting (Table 2). These benefits were realised through several mechanisms. As a central repository of audio-visual media, Memory Keeper was an easy and convenient way to enhance the experiences of the person with dementia and their visiting family. All participants felt using Memory Keeper provided more enjoyable and meaningful engagement between the residents and their family members, and supported their relationship.

Increases in the frequency and duration of relatives’ visits were observed – even for a family who had not been involved in media collation and Memory Keeper’s set up, or trained to use it.

For family to come in … makes such a difference in the person’s life, wellbeing, quality of life and health … and to have meaningful connection … you just can’t buy that. [P7]

[Memory Keeper] gives visiting a meaningful prop to use during visits – reducing pressure on both the visitor and the resident. [P6]

Further, contributing to the construction of their Memory Keeper content provided a tangible way for family and friends to help their loved one while supporting their own reminiscence and reflection. Other studies have also found that technology can support meaningful engagement between a person with dementia and family members acting as ‘informal caregivers’ by providing another avenue for their continued care of their loved one (Lazar, Demiris, & Thompson, 2015; Massimi et al., 2008).

P7 also anticipated benefits for their physical safety to parallel and complement those documented by the facility after the introduction of other social interventions in the prior six months.

Engagement of the person with dementia and their response to Memory Keeper

All participants thought that music prompts were the most engaging. Old photos and movie clips were also highly engaging. Common positive responses of the residents to these prompts were smiling, tapping or singing along to the music, and trying to recall names or other details (Table 2). As Table 2 indicates, some aspects of engagement and response were unique to individuals. The most remarkable example of an individual response was that of HT standing up in a session and inviting his wife to dance – a significant response from an individual with Lewy body dementia and associated Parkinsonism:

… it gives me goose bumps … the other day, he stood up in front of me and put his hand [mimes holding his hands on her shoulder and waist to dance] and I said “Do you want to dance?” And so, I got up and we danced! [P1]

Importantly, no participants reported any negative reactions to either the media or the device itself. Rather, participants reported that Memory Keeper would either capture the attention of the person or they would be disinterested or easily distracted and would look away. Other studies investigating technological interventions with persons with dementia have also found no negative responses or effects (Davis & Shenk, 2015).

Regarding whether the activity was engaging or elicited a response, participants thought this tended to depend more on the day, and the condition of the person with dementia, rather than on the media itself. However, externally sourced media (such as photographs of prominent locations in the town in which the person grew up) were generally less engaging, although this depended somewhat on the accompanying narrative and conversation provided by the participants. Davis and Shenk (2015) similarly found that responses to generic material can be unpredictable, depending somewhat on the individual preferences of the person. One person (RX) lost interest in the activity if the time spent was too long; however, P7 felt the attention span of this resident was extended by using Memory Keeper.

Memory Keeper has the potential to capture and store a large variety of content. To account for changing needs with disease progression and the unpredictable responses to media, the playlists and content within Memory Keeper must be easily modifiable after the initial set-up, a request echoed by formal and informal carers in a similar case study (Massimi et al., 2008).

Recruitment, media collection, Memory Keeper set-up, training and handover

Participant recruitment was challenging (Table 3). The trial coincided with school and Christmas holidays; coupled with the visiting and caring roles that family and friends were already undertaking for their loved one, many potential participants felt unable to commit to this trial. Challenges with the recruitment of persons with dementia and their families have also been noted in similar studies (Moyle, Kellett, Ballantyne, & Gracia, 2011).

Collecting, digitising and organising media were facilitated when family and friends were already engaged in photo collecting and reminiscing. Having access to family and friends who had been around for most of the person’s life was vital for compiling a cohesive set of media that reflected a lifetime of experiences and interests. Interestingly, a lack of confidence with technology, initially anticipated to be a major barrier, did not prevent anyone from participating in this trial (Table 3).

P8: So, the reason I keep asking this [P1], is because you were very apprehensive about technology, and you’ve said this a number of times that you don’t understand it or you’re …

P1: True.

P8: And yet you still haven’t brought that up, as something that you think has been challenging, really. So?

P1: Well I think that I just amazed myself that I could do as much I can do!

A technical challenge that repeatedly emerged was the difficulty with transferring music to Memory Keeper from USB, iTunes^© or Apple^© devices; simplification in the transfer of media between devices needs to be incorporated in future versions of the Memory Keeper.

Use of Memory Keeper in the long-term care setting

External factors provided greater barriers to Memory Keeper’s use than the people themselves. Most participants found the device intuitive and easy to use (Table 3) – participant P1, who was completely unfamiliar with computers and tablets, was able to use paper-based instructions to support her use of Memory Keeper, with great success. Primary or sole informal carers experienced more challenges due to individual circumstances. As Lazar et al. (2015) noted, family members may feel conflicted between using devices (such as Memory Keeper) and providing other activities, such as taking the person on outings. Similarly, enabling factors tended to relate more to the circumstances of the participants (Table 3).

In order to ensure the sustained use of technology such as the Memory Keeper, commitment from leaders is essential so that care staff are encouraged to use technology, particularly that which facilitates communication. In this study, incorporating Memory Keeper into the usual long-term care processes was identified as a potential challenge stemming from the limited technological skills and familiarity of the staff with the device, and their lack of time to experiment within the short time frame of the trial (Table 3). However, P7 anticipated that these barriers would be significantly reduced if the application was finalised and embedded within existing person-centred care practices. Furthermore, the ever-increasing use of and familiarity with technology by people in all sectors of society, including older people, will likely support the use of Memory Keeper and similar devices, in the future. Moreover, P7 could see numerous benefits of incorporating the app, including supporting person-focused care and strengthening staff, family and resident relationships.

Suggested improvements and recommendations for future development

Participants were asked to suggest improvements for future development of Memory Keeper. The main finding was that the process should be initiated with the person with dementia much earlier, ideally at the time of diagnosis, or at least before their move into the long-term care setting. An important benefit of starting earlier is that populating the Memory Keeper would provide a meaningful and proactive occupation for the person with dementia and their loved one(s) at a critical time when the person receiving the diagnosis may otherwise feel impotent and that they are facing a future with little hope (Preston, Marshall, & Bucks, 2007).

Participants also discussed whether group training may provide additional opportunities for staff, volunteers and family members who may need more practice and guided support.

Limitations

Recruitment challenges limited the number of persons with dementia and their family members who could participate in this pilot study. As Massimi et al. (2008) noted in their case study of a similar intervention, if Memory Keeper is further developed and tested, a longer time frame for recruitment, media collection and personalised development of the app should mitigate many of these challenges. Furthermore, implementation earlier in the journey of the person with dementia may allow them to take ownership of the process, rather than relying solely on potentially time-poor family and friends (Table 3).

A small sample limits the generalisability of the findings. However, Gibson, Timlin, Curran, and Wattis (2004) note that qualitative methods can be valuable in dementia research, even in a small sample size, by providing insight into the experiences of persons with dementia.

Additional limitations could be related to data collection. Participants could have exaggerated their positive feedback and experiences and minimised any negative experiences in response to their increased familiarity with P8. However, many problematic aspects of the app and its use were discussed candidly and in detail, both in the focus group and with participants throughout the trial. P8 consistently emphasised the importance of all findings – positive and negative – in potentially benefiting not only the current participants but also future Memory Keeper users; the results presented support the notion that the participants valued being able to make this contribution and suggest that the intervention could contribute to positive feelings of empowerment, self-confidence and self-efficacy.

Innovative practice

The findings from this pilot study are congruent with those emerging in the literature that indicate innovative technology can be a useful adjunct to quality of life in long-term care settings (Astell et al., 2010; Davis & Shenk, 2015). Absence of negative responses, and the social, calming and happy benefits for persons with dementia, their family and friends, care staff and the institution, provide relevant proof-of-concept data to justify the further development of Memory Keeper.

Maximum benefit is anticipated if personalised Memory Keepers are developed with the person with dementia at the earliest opportunity during the onset of the condition, so that the device is fully populated, and familiarity is enhanced. As stressed by the facility’s Lifestyle Coordinator, embedding Memory Keeper into the daily routines of an institution is one important way to cultivate person-centred care that sustains identity of the person with dementia, connection between people and job satisfaction for the staff.

Finally, the device has potential to provide a meaningful keepsake to pass down to younger generations in the family, because as Massimi et al. (2008) remarked, devices like Memory Keeper have potential to ‘archive a life’.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: We thank the JO & JR Wicking Trust for providing funding for this project.

Margaret McAllister is a professor of Nursing at Central Queensland University, in Noosa, Australia. Her qualifications include nursing (GradDip), mental health nursing (Grad Cert) and education (M Ed and Ed D). Her research and teaching are in health and wellbeing, mental health promotion and transformative learning. She has co-authored several books: The Clinical Helper, Stories in Mental Health, The Resilient Nurse and Solution Focused Nursing. She conceived the idea for this project, drawing on experiences working in aged care.

Jeanne Dayton holds a Bachelor of Nutrition and Dietetics from the University of the Sunshine Coast, Queensland Australia. In this project Jeanne worked as the research assistant, involved in the interviews, analysis, literature review and publication consultation.

Florin Oprescu is a health promotion and health communication specialist with the University of the Sunshine Coast. His qualifications include medicine (MD), public health (MPH, PhD), business management (MBA) and education (Grad Cert). Oprescu’s research experience encompasses a range of projects across topics and disciplines including medicine, nursing, paramedic science, occupational therapy, information technology, communication and education. One of his research interests is healthy ageing with a specific focus on quality of life.

Mary Katsikitis is a professor and Discipline Leader, Psychology in the Faculty of Arts, Business and Law, University of the Sunshine Coast, Queensland, Australia. Her qualifications include a BA (Hons) and a PhD in psychology. Mary currently holds the position of National Course Approvals Chair for the APS College of Clinical Psychologists. Mary has spent many years in clinical/health research. She is a Director of the Australian Psychology Accreditation Council (APAC) Board which is the national accrediting body for psychology programmes in Australia.

Christian M Jones is both an academic and commercial entrepreneur. He has a successful track record of managing large-scale academic research projects and spinning out Intellectual Property for industrial commercialisation. Christian is the leader of the Engage Research Lab – where technologies for social good are designed – and Associated Dean of Research for the Faculty of Arts, Business and Law. University of the Sunshine Coast, Queensland, Australia

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