Rethinking dementia care with Dee : Re-designing services for caregiving support
Dee - Your Dementia Caregiving Companion
Service Design | User Research | UX Design | Business Strategy
Winner of Design Enterprise Lab - Grand Prize for Innovation 2024
Team: Komal Pahwa, Anisha Bhatt, Daivik Gandhi, Kaja Szczechura-Evans, Melissa Chan, Edison Nunez Toro
Role: Research, Service Design, Business Strategy, UX design
Timeline: December 23 - August 24
Mentor: Markus Perkmann, Gregory Theyel
Partners: Royal College of Art, Imperial College London
Overview
Every 1 in 3 people born in the UK today will develop dementia in their lifetime.
A report in 2019, commissioned by Alzheimer’s Society from the London School of Economics and Political Science (LSE), found there are currently around 900,000 people with dementia in the UK. This is projected to rise to 1.6 million people by 2040.
70,800 people living with dementia in the UK developed symptoms before the age of 65.
It is estimated that 70 per cent of people in care homes have dementia or severe memory problems. It is estimated that 60 per cent of people who draw on support from homecare are people living with dementia.
More than 25,000 people from Black, Asian and minority ethnic groups in the UK are affected by dementia.
The economic impact of dementia is significant. In the UK alone the estimated societal costs were £34.7 billion, with the brunt of this met by people and their families. Globally, costs were at $604 billion, equivalent to 1% of the world's GDP. If dementia care were a country, it would be world's 21st largest economy.In the UK social care costs attributable to dementia are expected to cost £45.4 billion in the next 20 years.
Project Highlights & Challenges
Why is this important?
When someone in your family is diagnosed with dementia, it can emotionally, financially and physically overwhelm the family member. While caring for the people going through dementia we often neglect the ones who take care of them. They have a journey of their own which no-one talks about. It also often leads to social isolation while being caught up in care tasks. It’s often said that you need to take care of yourselves before you can take care of others, however the love we have for our family members especially when someone is going through a cognitive decline with dementia, our personal needs and wants often take a back seat.
Dementia Caregivers
Cost of living with Dementia
Problem Space
Family caregivers of dementia patients struggle with managing time, accessing reliable information, and finding support within their community.
The balancing of care responsibilities with personal life can be difficult, compounded by a lack of clear guidance and a sense of isolation. Existing resources currently do not address these challenges as a whole, leaving caregivers feeling overwhelmed and alone.
Family caregivers need a solution that helps caregivers manage their time, access accurate information, and connect with a supportive community, easing their burden and improving their well-being.
Research Methodology
We started with Desk research to understand user challenges in dementia caregiving and what’s lacking in the current system to fulfil their needs, to deliver and identify nuances.
Through stakeholder interviews and conversations, we have been trying to identify key problems, and pain points faced by caregivers in handling dementia as a part of their daily lives.
We did Stakeholder mapping to identify people in the system that directly or indirectly are impacting the decisions and services provided to caregivers
Some Stakeholders that we reached out to who have been actively involved to facilitate and validate our direction include:
Alzeimer’s Society UK
Age UK
Admiral Nurses working for NHS trusts
GP’s
Pharmacists
Previous carers
Carecity UK - Dementia Homes
NHS UCD and Digital transformation Experts
Co-designing with Carers
We also conducted a few workshop sessions with carers with whom we tested our initial prototypes ( low fidelity ) which helped us get our insights and understand user needs better to further streamline our HMW and understand our user group a step further. ( we continue to work on it )
We walked them through our service and asked them a few questions such as ‘What does an ideal day look like for them’?
Features List
Research Insights through Workshops and Online Forums
Community
Having immediate access to experts, or people who have gone through similar journeys can help caregivers feel supported and relieved in times of need.
Caregivers seek companionship in their journey to feel supported and less lost.
Knowledge
Caregivers need consistent access to information which they can go back to any time throughout their journey.
Having information available in different languages makes it less challenging.
People prefer and trust information sources that comes through trusted organisations and sources like NHS, HCPs.
Time Management
Constant reminders and notifications around daily activities can help reduce cognitive load.
Distributing responsibilities can help ease the burden.
Task management/ organising can help caregivers take some time off by planning their day better in advance to reduce cognitive load and lower decision fatigue
Feedback provided by caregivers through Alziemer’’s Society UK
Our User Group through our User Persona
User Persona
Understanding User Journeys
Primary family caregiver
Non-professional carers who support their loved one.
Key decision maker for the PwD.
Responsible for caring for PwD.
Point of Contact for PwD.
Hypothesis
Family caregivers, often with guilt, feel burdened to care for their loved one, with various tasks to handle throughout the day.
They are often left to seek out information about the condition and balance their own lives whilst being there for their loved ones. Worst of all, caregivers feel alone during this difficult time.
How Might We’s?
Solution Mapping
Possible directions
After thinking about potential directions we streamlined our HMW as follows-
How might we help family caregivers of Dementia to balance their everyday lives with their daily caregiving responsibilities to ease their burden and improve their overall well-being ?
Our One-Stop Solution — Dee, The Dementia Caregiving Companion
Value Proposition - What does Dee do?
Based on user needs that we discovered in our research, Dee supports in the following ways:
Dee helps dementia caregivers build confidence by providing the right information and support at the right time.
It helps them build their community of caregivers whom they can reach out to whenever they feel like it.
It helps them manage their time better so that they have time for themselves and can balance their work, personal life and caregiving better.
Overrides the need for multiple apps needed to look for caregiving answers, manage daily tasks and/or connect with the community, thereby helping them reduce cognitive overload and decision fatigue faced as a part of their journey.
Dee features corresponding to dementia caregiving tasks
Prototyping & Wireframing Features
Understanding Market Opportunity
The Dementia Landscape
Go-To Market Strategy
Projected RoadMap
Next Steps
Through Dee, my goal is to support the caregiving community by alleviating some of their burdens and ensuring they feel acknowledged and heard. I aspire to help caregivers live fulfilling lives alongside those they care for. I am committed to achieving this by iteratively testing and refining our approach in collaboration with caregivers within the community, eventually taking it further beyond Europe and UK.
