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DementiaHack 2017: Design for a Cause

This past weekend, I had the pleasure of participating in Toronto’s 2017 DementiaHack, organized by HackerNest, an international tech community, and presented by Facebook.

The hack-a-thon included four Challenge Sets (CS) targeted at devising solutions for four communities that are affected by dementia:

  • CS1 – People diagnosed with dementia,
  • CS2 – Caregivers of people with dementia (often family members),
  • CS3 – Clinicians who work with dementia patients, and
  • CS4 – Researchers who are investigating dementia.

My team's idea was a financial projection/planning app for CS2 - caregivers of people with dementia.

Rationale

According to surveys, finances is one of the [leading sources of stress for Canadians (1)][1]. [Half of Canadians][1] lose sleep over worrying about finances and a comparable number are embarrassed about their lack of control over their finances. These worries multiply for those who must care for people with dementia. According to a study by the Alzheimer Society Canada, the projected costs of dementia may increase one's personal expenses by [550%][2]. This is in addition to the [19.2 million hours][2] of informal unpaid time that caregivers must spend, often giving up hours of paid employment, to take care of their loved ones with dementia.

With these concerns in mind, we rationalized that a digital tool which helped caregivers prepare for the costs of dementia would be beneficial. In particular, we wanted to be able to help caregivers anticipate increases in costs, which were difficult to predict due to the [irregular rate of degeneration of dementia][2].

Research

Our research phase consisted of two parts: (1) qualitative research: interviews with caregivers of people with dementia who were Mentors/Judges at the DementiaHack, and (2) quantitative research: gathering numbers for the costs of products and services in Ontario that dementia patients and their caregivers may need.

Qualitative Research

During our interview with caregivers at the event, we found 5 key insights about the financial burdens of caring for people with dementia (see [3] for further notes):
  1. Caregiver burnout was common, often due to lack of sleep, worry, stress, and especially losing time from work in order to care for their loved one
  2. Incontinence and behaviour symptoms were two major flags for later increased expenses
  3. Cognitive decline varied greatly from individual to individual - a dementia patient could experience any degree of cognitive degeneration in the 2 to 20 years they may survive after diagnosis; the average lifespan after diagnosis was 10
  4. Canada had little to no public funds to aid caregivers and their families
  5. Waitlists for the primary source of financial planning help, CCAC (Community Care Access Centre), were around 8 years long and individuals could not apply until after they developed full symptoms of dementia

From these insights, we concluded that our app would have to rely on user generated data and occasional assessments to map anticipated costs. It would be too difficult to provide a profile for projected costs from a one-time assessment, due to the high variance of decline between individuals. Instead, the app would use caregiver input about new or changing symptoms to tack on expected expenses, corroborated with some average rates of decline data from academic research. Over time, as the user base grew, it would become possible to have a larger body of data to draw from, one which could combine a timeline of caregiver inputs with a timeline of financial spending to generate timeline projections based on dementia symptoms.

Quantitative Research

To get an idea of the real financial costs of dementia, we put ourselves in a caregiver's shoes and scoured research reports, population surveys, service provider websites, and care community publications for common expenses and their prices. For our prototype for the DementiaHack, we cut the list down to the 25 most common expenses, spanning seven categories:
  1. At Home Care: costs needed to take care of an individual at home, most often renovation and nursing costs
  2. Support Equipment: equipment which could apply to someone staying either at home or in a care facility
  3. Long-Term Care Facilities and Services
  4. Personal Support Workers and Nursing: including the cost of hiring workers and cost multipliers such as incontinence care, which also increased the cost support workers as well as other items
  5. Community Care: including meal delivery and transportation costs
  6. Professional Services: cost of legal fees and other administrative aid
  7. Unexpected Costs: such as the cost of leaving work, travel, and other auxiliary costs caregivers often have to shoulder

We also obtained a list of potential income sources that caregivers could also include in their assessment, to offset the added costs of dementia. These often included pensions, retirement savings, and insurance that would kick in for the patient with dementia, who was often a retiree.

Functionality

With the 30-hour limitation of DementiaHack, our prototype app slimmed down some of the features we'd hoped to implement. We left out the sources of potential income, visualizations of cost projection, and a timeline for costs. We simply did not have the time available to develop these features.

Instead, our prototype app was mainly a research aggregation and simplification app. Having done a lot of financial research, we turned our long list of expense factors into a short user-friendly survey that asked relatable questions about the caregiver's experience and their loved one's symptoms. The answers from this needs-based survey would then feed into our expense factors and generate a tally of expected expenses the caregiver may have to face.

With the stress of facing finances on top of an unpredictable degenerative disease, we thought that navigating the complexities of multiple websites, publications, and resources could be overwhelming. Thus, we hoped our prototype app would be a simple tool that could relieve this stress by translating financial and economic jargon into the day-to-day problems caregivers actively face.

Design

The UI design of our app was based around three key principles:

  1. Accessible: we chose a colour palette of hues and purple, to anticipate users who may be colour-blind. We also chose large and clear type.
  2. Friendly: we used simple language and short sentences that would give caregivers the information they wanted without overwhelming them.
  3. Respectful: often, the elderly are treated in a patronizing way - we wanted to avoid this by creating a no-nonsense app that presented simple features in an intuitive way. We wanted to avoid the kind of "help text" that may make a user feel as if they are being lectured to.

To accomplish these things, we created a mock-up with simple navigation: three tabs at the bottom split into "Survey", "Assessment", and "Projections". The Survey section stored the caregivers' answers to our survey about their needs, and links to take the survey again or change their answers; the Assessment stored a categorized list of expense items typically associated with dementia care, with the items relevant to our user toggled on; and the Projections page showed a simple budget divided into one-time expenses and monthly expenses.

Intake Survey

On a user's first visit to the app, they are shown a screen that invites them to take the intake survey to assess their needs.
The welcome screen to a first-time user inviting them to take the intake survey.

The survey showed large print and large icons for the user to tap as their response. Navigation also involved large contextually-placed buttons at the bottom of the screen.

A survey question.

Assessment

The assessment page showed a breakdown of the costs that the app had determined the user may need. The user is free to adjust these cost here. In the full app, these options would also have "question" icons next to them for users to tap for more information about the item and its cost, and the user would be able to expand each item to finetune its cost. In the prototype, we used boolean toggles for simplicity.
The Assessment page

Projection

On the Projections page, a sample budget is provided that accounted for the initial costs and monthly costs that a caregiver would have to account for. blog4-proj
Anticipated caregiver costs.

Room for Improvement

At the conclusion of the event, we received a lot of feedback from judges. Some of the most useful comments were:
  1. Finer-Grain Surveys: judges asked if it would be possible to have more surveys or a finer-tuned survey to tackle more complex details in caregivers and their charge's lives. I definitely think that the survey could be split into multiple short surveys, borrowing questionnaires that clinicians use to diagnose dementia phases, in order to project costs.
  2. Timeline of Cash Flow: judges expressed much interest in the potential to anticipate future costs -- but they also wanted to see a feature that could calculate net worth/expenses based on income as well as expenses
  3. Marketability: although this tool was warmly received by caregiver judges and mentors, they expressed concern that the design of the app didn't allow much room for sustainable business partnerships or marketability
  4. Accessibility Concerns: there are also some concerns that the text was too small and the buttons in the survey could have been more clearly designed to be a tappable button
In addition, looking back at our product, I think there could be some useful design changes as well:
  1. Better Information Architecture in Navigation: at the moment, some of the pages are "hidden away" in the main navigation and there is no clear sitemap for how those pages are organized - things such as the "welcome" page and "review answers" pages aren't shown anywhere in the navigation
  2. A Homepage: there is no dashboard at present that acts as a portal or overview of the app for a first-time user. This can make it confusing to tell how the different parts of the app relate to one another
  3. Help Button: the app lacks contextual help buttons or feedback functionality for users who need an introduction to its functionality, or who want to voice their concerns about its usage
  4. Unclear Functionality of Assessment Toggles: At present, it is not obvious that the assessment toggles are linked to the survey responses and to the projections - it may be confusing for a user that after doing a survey, there is this additional step listing a bunch of cost items. It can be unclear why it is relevant at all.
  5. When do initial costs happen? Some initial costs happen before others - it is unclear in this app if those costs listed are all taking place in one month or in one year, or any other time frame.
  6. Skipping the Survey? The user loses some control in the beginning of the app, being forced to go through a survey that may include questions they are not sure about. There is no option to skip the survey to get used to the idea of the app first, or any help context for more guidance on how to answer each question.
  7. User Privacy: Some survey questions can be quite personal - there is no log-in screen or security measures in place to protect sensitive user data.

References

  1. Financial Planning Standards Council, "Canadians Cite Money Worries as Greatest Source of Stress," FPSC, Nov. 13, 2014. http://www.fpsc.ca/alerts-updates/2014/11/13/canadians-cite-money-worries-as-greatest-source-of-stress
  2. L.W. Chambers, C. Bancej, and I. McDowell, "Prevalence and monetary costs of dementia in Canada," Alzheimer Society Canada, 2016. http://www.alzheimer.ca/~/media/Files/national/Statistics/PrevalenceandCostsofDementia_EN.pdf
  3. M. Cheung and R. Downes, "DementiaHack Research Notes," Mar. 4, 2017. [Unpublished notes]. https://docs.google.com/document/d/1ptbLmtrfT-I7D4Z0V_UkuZBFUZEa3-KzxAf6n666RzY/edit?usp=sharing