ForgetMeNot | Personalised Digital Memory Book for Dementia

Description

The ForgetMeNot Platform acts as a personalised and bespoke digital memory book for individuals living with a form of dementia. This dementia communication platform features three main tools: photos, music and voice recordings which provide a simple means for family members and caregivers to practice reminiscence therapy, a practice with proven benefits in reducing agitation and stimulating brain activity.

The platform focuses on the individuals long term recall ability rather than short term memory limitations. Simply download the app, make an account for your loved one living with dementia and share your unique four digit “Family Code” to get the whole family involved in the reminiscence experience.

Upload photos from holidays in 1964, play their favourite music from childhood or record a message from grandchildren. But above all else, connect, remember and talk.

The photos feature allows loved ones to upload photographs into albums. They will be prompted to give some description about what is happening in each album to set context and can be used as conversation triggers. There are many benefits to using photographs as a means of reminising.
1. Pictoral tools were found to have a positive effect on comprehension of conversation and decision making abilities (Chang & Bourgeois 2020).

The Spotify Integrated Music Tool allows loved ones to make playlists within the ForgetMeNot app and will be played through Spotify. Music also has many benefits:
1. Agitation, negative mood, and positive mood all benefit from the music-based intervention.
(An Individualized Music-Based Intervention for Acute Neuropsychiatric Symptoms in Adults with Cognitive Impairment,2018).

2. Personal music intervention improves swallowing in individuals with advanced dementia.
(Music & Memory and Improved Swallowing in Patients with Advanced Dementia, 2018).

3. Personalized music is associated with a reduction in the amount of antipsychotic medication taken by nursing home residents.
(The Impact of Music & Memory on Resident Level Outcomes in California Nursing Homes,2020).

The Voice Recordings tool can be used in multiple ways by family members and carers. We suggest: Recording their favourite poem, recording a message from a loved ones (voice familiarity) or recording snippets of conversation with the person living with dementia. This can be used for memory recall. This process also has been proven to benefit an individual living with dementia.

1. Auditory stimulation on autobiographical recall can help to practically manage dementia (Foster & Valentine, 2010)

From our own personal experience, we understand the difficulty that can surround communication between those living with a form of dementia and their loved ones. We wanted to create a platform that bridges this gap and provides a simple and effective means of communication between those parties.

The app is currently being in community care settings across Ireland and being tested by some of Ireland’s leading dementia organisations. We look forward to seeing the positive impact the ForgetMeNot App can make in the field of dementia care.

Like the ForgetMeNot flower, we believe that with the help of others a person with dementia can prosper and grow. Add value to every visit with ForgetMeNot.

Aim of Initiative

The aim of the ForgetMeNot platform is to provide a simple and effective means for families to practice reminiscence therapy, a practice with proven benefits for the individual living with dementia.
From our own personal experience, we understand first hand how difficult it can be to communicate with those living with dementia. Both Amy and I have played a role in caring for our loved ones living with dementia.

Both my grandmother Margaret and Nana Kitty have lived with the illness. As a teenager, it was certainly difficult for me to understand how someone who once nurtured me, now does not remember my name. A means of overcoming this was using sensory prompts like photo albums and music to create conversation between us and stimulate long term memory recall. I fondly remember looking through photo albums with my grandmother Margaret of summers spent in Salt Hill in Galway. She also loved music and singing songs was a huge source of happiness for both of us throughout her illness. Amy used story telling as a means of communicating with her step mother Ellen. They would read her favourite poetry and books from her childhood as a means of stimulating her brain activity and creating conversation between them.

Little did we realise that a practice that we had been doing for years was actually the basis of an emerging body of research on reminiscence therapy.
Reminiscence therapy is a non-pharmacological intervention for dementia. It involves using moments of the past and sensory prompts to evoke memories in the present. Research on reminiscence therapy has shown that the practice can have a positive impact on stimulating brain activity in a person living with dementia. It can be effective in managing cognitive symptoms such as reducing agitation and depressive symptoms.
Many individuals are aware of this practice and its benefits, but do not know where to start with it. The ForgetMeNot platform gives families and caregivers an opportunity to practice reminiscence therapy with those living with dementia through photos, music and voice recordings.

Our aim is that the platform will help to reduce the stigma around dementia and to help highlight that, if the right memories are targeted, you can continue to communicate together. We look forward to seeing the benefit that this nuanced approach to communication will have in the field of community care.

Who is it aimed at

The initiative is aimed at individuals living with dementia, their loved ones and those in a formal caregiver role in community care settings. Each of these three user groups can and are interacting with the app in order to bridge the gap in communication.

The account is usually set up by a family member on behalf of the individual living with dementia. However, the whole family can get involved in the reminiscence experience by inputting their unique four digit family code to unlock the individual’s bank of memories and upload into the app.

The ForgetMeNot team have been working alongside other dementia organisations in Ireland in the promotion of the app. We look forward to continuing to foster these relationships and increase our user base in the coming months.

3 Steps critical to success

1. Our Personal Story:Our personal story played a crucial role in the development of ForgetMeNot, our dementia communication platform. Inspired by our own experiences with loved ones affected by dementia, we intimately understood the challenges faced by families in preserving memories and maintaining connections in the face of cognitive decline. Our personal journey ignited a deep passion to create a solution that would bridge the communication gap and provide a means for families to engage in reminiscence therapy. Drawing from our own emotional connections and insights, we channeled our energy into crafting a platform that would empower families to share and cherish memories in a digital, user-friendly manner. Our personal story served as the driving force behind ForgetMeNot, fueling our commitment to making a positive impact on the lives of those living with dementia and their families.

   (Below is written in the third person for ease of understanding)
   Amy’s Story:
   Amy’s Step-mum, Ellen, had Alzheimer’s. Amy and her siblings would read books and poetry with Ellen. They would also share stories with each other. Amy fondly remembers listening to Ellen and her stories. She was a wonderful storyteller.
   One of the last times Amy saw Ellen, Ellen gave her a book for her birthday. Even though Ellen would forget her way home and repeat the same things many times, she remembered it was Amy’s birthday coming up. Amy still has this book.
   Amy states that “I had heard of Alzheimer’s before but I had never known someone so directly linked to me to have it.
   You don’t always know what to do and there is this feeling of helplessness. You’re not able to stop it and somehow you have to find a way around it. Sharing stories and laughing was a way for my family.”
   “Ellen loved to tell stories and was very good at them, I would listen eagerly to her tales of life. She would share stories of her past, and together we would share stories, and even in her later years we would still chat about the past.”

   Niamh’s Story:
   Niamh’s Nana Kitty is currently living with dementia. Niamh sparks conversation with her about Kitty’s childhood growing up in County Cork through the use of photographs from her school days.
   Music has played an important role in her care. They have made a habit of singing one of Kitty’s favourite song’s “Banks of my own Lovely Lee”. Kitty doesn’t even hesitate to correct Niamh on the lyrics of the song!!
   Niamh’s other Grandmother, Granny Margaret, lived with a form of Dementia but sadly she passed away three years ago. Niamh would regularly use photographs and music to reminisce with her grandmother.
   “Although she did not know my name or my relationship to her, she would sing along with me to the song “The Town I Left Behind

2. Banagher
3. “User Validation and Testing of the ForgetMeNot Platform:A crucial step in the success of the was testing it with our intended user groups. This was of vital importance as the platform needed to be easy to use and an effective means of practicing reminiscence therapy. Throughout each stage of the design process, from just drawings on a page, to now having a functioning platform, it was important to keep user needs at the forefront. The three user groups, people living with dementia, loved ones and caregivers have played an essential role in building the platform thus far and we look forward to continuing to nurture these relationships as the business expands.

   To validate our idea in the very early stages, we attended lectures on dementia, visited care homes, and talked with those living with the illness. We did not just want to design an application from their own experiences. It was important to create something that a wider audience could connect with.
   The idea was then developed further into a low-fidelity prototype. The interfaces were further tested and validated with relevant user groups ahead of prototype development.

   The functioning prototype was tested with leading dementia organisations in Ireland, including members of Care Alliance Ireland and the Dementia Carers Campaign Network. The app was tested out on the three main users, those living with the illness, carers, and loved ones who are affected by it. This was carried out over a few weeks online, during Covid-19.
   After receiving the feedback on what their users thought, the results were analysed and necessary changes were made to the application. It was important for the app to be simple to navigate and one which has an age-friendly interface. One of the main edits made was changing icons to text to make it easier to understand for the older generation. For example, the burger menu icon was replaced with a ‘Menu’ button.

   It is with pleasure, that we can now conclude that the ForgetMeNot platform is a simple and effective dementia communication platform which can help transform the lives of those who use it,

3 Challenges in Planning / Delivery

1. Greater Family Involvement:Caring for a loved one with dementia can often be challenging and overwhelming for families. ForgetMeNot addresses this by providing a platform that encourages and enables family members to actively engage in the care process through sharing their unique “Family Code”. Through the collaborative nature of the platform, family members can contribute their own memories, photos, videos, and other forms of reminiscence materials, creating a collective repository of shared memories.

   This active participation not only allows family members to reminisce together but also promotes a sense of shared responsibility in caring for their loved one with dementia. By involving the entire family, ForgetMeNot helps distribute the caregiving burden and fosters a supportive and inclusive environment. The platform’s collaborative features also encourage ongoing communication and engagement among family members. They can share stories, comment on memories, and provide support to one another. This interactive aspect helps strengthen family bonds and provides emotional support during the challenging journey of dementia caregiving. Furthermore, the involvement of family members in reminiscence activities through ForgetMeNot can have a positive impact on the overall well-being of individuals with dementia. The presence of familiar faces, voices, and shared memories can provide comfort, reduce anxiety, and enhance their sense of identity and connection.

   In summary, ForgetMeNot promotes greater family involvement in dementia care by providing a collaborative space for reminiscing and sharing memories. This involvement not only strengthens family bonds but also helps distribute the caregiving responsibilities and provides emotional support to both individuals with dementia and their families.

2. As young entrepreneurs, gaining attention and belief in the market was undoubtedly difficult. In the early stages, we often felt lost in navigating the start-up world, especially in the field of dementia care.The field of dementia care is often associated with experts, professionals, and experienced individuals who possess specialised knowledge. Consequently, some individuals may have been sceptical about our ability to understand the complexities of dementia and create a meaningful solution as neither co-founder has had a professional background in the field. Overcoming this hurdle required us to showcase our dedication, passion, and extensive research that went into developing ForgetMeNot. As well as sharing our personal story of caring for our loved ones living with dementia, we sought partnerships with healthcare professionals and engaged in collaborative discussions with experts in the field to validate our approach. By demonstrating our commitment to learning, actively listening to the needs of individuals living with dementia and their caregivers, and continuously refining our platform based on their feedback, we gradually earned the trust and credibility necessary to gain recognition and acceptance as young entrepreneurs striving to make a positive impact in the lives of those affected by dementia.
3. Introducing a communication tool, like ForgetMeNot, for individuals with dementia that relies on technology posed several challenges in gaining people’s trust and belief in its effectiveness.Firstly, there is the prevalent stereotype that older adults, particularly those with dementia, struggle with technology and are resistant to its use. This certainly led to scepticism regarding the feasibility of a phone-based communication platform for this demographic, especially in the early stages of development. This posed a challenge in early development stages with many stating that a physical tool may be better suited. Additionally, concerns were raised about the potential complexity of the technology, as well as fears of creating greater confusion or frustration among users with cognitive impairments.
   Overcoming these challenges required extensive testing and awareness campaigns to demonstrate that our technology has been adapted and tailored to meet the specific needs of individuals with dementia. By providing clear and intuitive interfaces and simple functionality, we were able to gradually build trust and instil confidence in the efficacy of the ForgetMeNot platform. Everything within the app is clearly labelled and there are no in-app adverts which may cause confusion.

   Moreover, COVID 19 has certainly and somewhat unintentionally played a role in increasing older people’s adoption and use of technology. It caused a greater reliance on technology to bridge the gap and maintain social connections. Data also shows that 85% of over 65’s own a smartphone.

   Although this was a challenge at the beginning, witnessing the positive impact the platform has had firsthand has helped dispel doubts and encourage broader acceptance of using technology as a tool.

3 Outcomes / Benefits

1. Support from Community:The unwavering support from the dementia community has been instrumental in the remarkable success of ForgetMeNot thus far. We are incredibly grateful for the collaborations and partnerships we have formed with leading organizations in Ireland, whose expertise and guidance have been invaluable in shaping and refining our platform. Through their support, we have been able to establish strong connections within the dementia care network, gaining insights and perspectives from caregivers, healthcare professionals, and individuals living with dementia themselves. The endorsement and recognition we received, including national PR coverage on esteemed platforms like the Ryan Tubridy Show and features in the Irish Times, have helped us reach a wider audience and generate awareness about the importance of innovative communication solutions for those affected by dementia.

   The overwhelming demand for change in dementia communication, driven by the inherent need to bridge the gap and foster meaningful connections, has fueled our determination to continuously improve and expand ForgetMeNot. The collective efforts and support from the dementia community have played a pivotal role in our journey, and we remain committed to making a lasting impact in the lives of individuals living with dementia and their families.

2. Breaking the stigma around dementia:Knowledge is a powerful tool when it comes to combating stigma. As many are aware, there are over 64,000 people living in Ireland with a form of dementia and this is set to increase to over 150,000 in the next 20 years. As the numbers increase, the palpable lack of real understanding about the illness comes to light. Therefore, when given a platform to discuss the illness, it was important for us to use it to try to de-stigmatise it. Many believe that dementia is a thing that just happens to elderly people when they “begin to lose their mind” or “just getting old”. Moreover, a stigma certainly exists around the memory of a person who has dementia, who now “can’t remember anything”. The underlying stigma exists partly due to the lack of public awareness and understanding of the disease. It is often accompanied by negative stereotypes, labelling those affected as helpless or burdensome. This prejudice not only isolates and marginalises those with dementia but also hinders open discussions, vital research, and the development of effective support systems. Challenging this stigma requires education, empathy and a change in societal attitudes. As co-founders of ForgetMeNot, we endeavour to break down the stigma exists throughout highlighting the power of reminiscence therapy and providing an new approach to communication which the research can show actually works!

   We have helped to create a more inclusive and supportive environment for individuals living with dementia through the ForgetMeNot community. We need to ensure that well-being and quality of life is kept at the forefront of discussion.

3. The Digital Enabler of Reminsicence Therapy:The ForgetMeNot platform has created a nuanced approach to practicing reminiscence therapy. ForgetMeNot leverages technology to revolutionise and simplify the practice of reminiscence therapy for families and caregivers.
   Traditionally, families relied on physical forms of sensory prompts, such as photo albums or personal items, to engage individuals with dementia in recalling memories. However, our platform replaces these physical prompts with a user-friendly digital interface that offers numerous advantages. Families can create a personalised profile and easily upload and update photos, make playlists and audio recordings that hold significant meaning and memories. By utilising a unique four-digit family code, the platform encourages active participation from all family members, allowing them to contribute their own reminiscence materials. This collaborative approach fosters a sense of togetherness and strengthens family bonds, as memories and stories can be shared and enjoyed collectively. This is something that cannot be achieved in the more traditional methods of reminiscence therapy. Moreover, the digital nature of ForgetMeNot enables quick and convenient access to a vast collection of memories, making the reminiscence therapy process more efficient and time-effective. You spend less time on the process and more time creating conversation.

   Overall, our platform harnesses the power of technology to enhance and streamline reminiscence therapy, making it more accessible, inclusive, and engaging for families dealing with dementia.