DESIGN FOR AMERICA

Seniors with Alzheimer's

The Problem

Alzheimer’s Disease affects millions of Americans of all ages. Hardships of the disease include dementia, mood swings, personality changes and much more.

The family members of seniors living with Alzheimer’s experience a significant amount of stress and psychological burden when transitioning into the role of a caregiver. Not only do they have to balance a new set of responsibilities with the old, but they also lose a sense of connection with their loved one who is experiencing the symptoms of the disease.

As members of Design for America, we want to use design thinking to provide support to Alzheimer’s caregivers and lessen some of the weight on their shoulders.

TEAM:

Alex Morrow (Lead), Abby Kostukovsky, Rachel Reyes, Erin Songwang, Healy Cho, Niki Tran, Sitarah Zemar, Sunny Yang

DURATION:

October 2018–May 2019

Initial Research & Assumptions

Through interviews with UCSD students, we found that students of all different years and experiences with the campus had trouble navigating it when they needed to find a new place. Students used a variety of methods to find specific places, such as Google Maps, UCSD Maps, and asking strangers for directions. What we found was that existing options lacked the ability to guide students to rooms, they could only give directions to buildings. What we set out to do was help students find all the nooks on campus that are usually hard to find.

FINDINGS:

Nearly 11 million caregivers are family members.
Caregivers experience psychological burden from managing severe psychiatric symptoms, behavioral disturbances and patient’s quality of life.
There is no regulated way to care for patients, since different caregiving practices work better for different people.
¼ of caregivers are in the sandwich generation, meaning they take care of both kids and adults.

Connecting with our Stakeholders

After conducting secondary research, we began reaching out to a wide variety of organizations, groups, and individuals in order to better understand the challenges that families face while caring for an Alzheimer’s senior. We wanted to hear personal stories from real families who are affected by the disease, and from professionals who have experience researching and managing the symptoms of the disease.

Our interview subjects included the Alzheimer's Research Center, Glenner Center Town Square, and a Caregiver Support Group.

ALZHEIMER'S RESEARCH CENTER

We developed a relationship with Dr. Salmon, a faculty member on the Neuropsychology Team, and Tracey Truscott, a member of their social work team. In addition to learning a lot about the research being done at the center and challenges they have seen families face when taking care of a family member with Alzheimer’s Disease, they also helped us get in contact with a caregiver support group that they run.

GLENNER TOWN SQUARE

We reached out to the founder, Dr. Mindy Baker, of a local Alzheimer’s care center. This organization focuses on engaging participants using specialized activities, known as Reminiscence Therapy, in order to ease the transition from living at home to moving into a full-time care center. We visited the center and observed how they adapted a space to cater to seniors with Alzheimer’s, as well as when families brought their loved ones to the center.

CAREGIVER SUPPORT GROUP

Our local research center at UCSD hosts weekly meetings for caregivers — both familial and certified — of Alzheimer’s seniors. We attended one of their meetings and asked about their lifestyles.

INDIVIDUAL INTERVIEWS

We asked peers if they knew of people who have firsthand experience in dealing with the disease in order to gain a unique and personal perspective to supplement our research. Ultimately, we connected with a peer’s grandmother and conducted an informal interview with her.

FACEBOOK SURVEY

We decided to create an anonymous survey that would allow people to describe their personal experiences on how knowing someone with Alzheimer’s has affected their lives. This would provide us with more qualitative data about family members whose loved one has Alzheimer’s. We then posted this survey on several pages on Facebook.

Finding Patterns

To make it easier to visualize the data we had collected, we created an affinity diagram and used it to identify patterns.

We created an affinity diagram from all of our interviews and observations. From our many notes, we identified a few noteworthy and repeated findings:

Senior has no specific caregiver even though they have lived in assisted living for at least 4 years
Family rotates caregiving between siblings — kids do stuff to help with bathroom and carrying him to bed because siblings are too old
Senior is most responsive during family visits at their care center
Families want reminders for meals and hygiene to help their loved ones
Family member feels disconnected because of her grandma’s memory loss

After putting everything onto paper, we sorted them based on their similarities. We went through this process twice to refine the categories, and ended up with 16 groups. The most prominent insights were:

FAMILIAL CAREGIVERS: Many caregivers of seniors with Alzheimer’s are familial or unregistered. Often, families have multiple members taking turns caring for their loved one.

ORGANIZATION BETWEEN CAREGIVERS: There is no medium of communication used by ALL caregivers to share updates from their “shifts” with each other.

CAREGIVERS' EXPRESSED NEEDS: Caregivers in the support group expressed a need for a reminder or tracking method to manage daily tasks (i.e. hygiene, meals, medicine, etc.). Additionally, they want a product or activities to keep the senior engaged throughout the day.

COMMUNICATION TROUBLE: A senior’s forgetfulness and speech degradation often leads to frustration while trying to communicate with their caregivers and can create a disconnect between them. This is one reason for a caregiver’s emotional burden.

PHYSICAL STRAIN: Managing the physical symptoms is strenuous for caregivers. Aiding with basic needs like clothing, bathing, etc. proves physically demanding.

Narrowing the Scope

Before moving any further with our project, we decided to revisit our initial problem statement and narrow it down using the data we collected. After brainstorming many different problem statements, we realized that there were two aspects we could focus on when designing a solution:

MANAGING PHYSICAL TASKS

Familial caregivers primarily focus on fulfilling a senior’s basic needs like getting dressed, serving food and water, showering, etc. However, managing these tasks is physically challenging and time-consuming. Since these family members have other responsibilities, this can be a source major stress and can contribute to caregiver burden.

We are attempting to decrease the time and effortit takes to complete at least one task that a caregiver must perform daily to fulfill a basic need.

“How can we help a caregiver manage a senior’s personal needs that are the result of Alzheimer’s symptoms?

Narrowing the Scope

MANAGING PHYSICAL TASKS:

We are attempting to decrease the time and effort it takes to complete at least one task that a caregiver must perform daily to fulfill a basic need.

“How can we help a caregiver manage a senior’s personal needs that are the result of Alzheimer’s symptoms?

MANAGING COMMUNICATION AND CONNECTION:

In order to keep up with a consistent schedule in taking care of a senior with Alzheimer’s, family members often switch off with one another throughout the day in shifts. However, this transition isn’t always smooth. Families rely on multiple mediums such as group chats, notes, etc. to relay what has been done throughout the day with their loved one. Additionally, seniors are often left out of the dialogue.

We are aiming to improve the transparency not only between caregivers and seniors with Alzheimers, but also between caregivers themselves.

“How can we improve a caregiver’s nonverbal communication with other caregivers and seniors with Alzheimer’s Disease?”

Ideating

Some of the ideas that we had included a sink with automated water temperature, appliances on timers, a fidget board, and bendable utensils.

Next, our team decided to brainstorm possible solutions for each “How Can We” statement. We were left with two lengthy lists, which we then voted on and selected our top options from each.

IDEAS FOR MANAGING PHYSICAL TASKS:

Clothing that is easy to remove or put on — If clothing is modified, caregivers would save time on this vital daily task.
Safer cooking utensils — Since seniors with Alzheimer’s can lose strength and range of motion, we would alter everyday pans and other cooking supplies to help them cook and eat.

IDEAS FOR MANAGING COMMUNICATION & CONNECTION:

A large wall calendar for family members to write on daily— This would help them track the senior’s health as well as let each other know what has happened throughout the day.
Customizable labels or photos to stick on cabinets — Seniors would more easily remember where to find objects by seeing labels such as “plates go here” on the correct cabinet. This would also help them finish a task on their own without stopping or getting distracted.

Ultimately, our team wanted to test one idea from each problem statement before settling on one idea. The reasoning for this was to see which idea was better addressing a real problem families face, which we would find out during the testing phase. And so, our team decided to split into two sub-teams. One team began researching and prototyping adaptable clothing, while the other did the same for calendars used by caregivers.

Prototyping

TEAM 1: ADAPTIVE CLOTHING

One of the solutions we decided to prototype was adaptive clothing, particularly for patients later in the progression of Alzheimer’s who often deal with motor control challenges. These clothes are modified to exclude buttons, zippers, and other mechanisms that are difficult for seniors to use when dressing themselves.

We started out by researching existing products, and found that the market is already very saturated. However, most adaptive clothing is expensive. We decided to instead design a DIY guide for making adaptive clothing at home from items that the person would already have in their closet. Despite our attempts to create functional adaptive clothing prototypes with thrifted clothes, velcro, button snaps, and magnets, we realized that we didn’t have enough time to do the necessary research and learn the basic tailoring skills needed to make working clothes. Instead, we decided to focus all of the team’s effort on moving forward with our second concept.

Using clothing from Goodwill, snaps, velcro, and other tools we attempted to DIY adaptive clothing for both men and women.

TEAM 2: COMMUNICATION BOARD

As an alternate concept, we wanted to create a communication board that would address the fact that families have multiple caregivers taking care of their loved ones in shifts. Not only would they be able to plan and track their day with an Alzheimer’s senior, but this information would be readily available for the next caregiver to see during their shift.

Before designing the layout of the boards, we performed a competitive analysis of other daily care plans and noticed that many of them share a prominent feature. Most are organized according to time of day, while fewer are organized based on thetask or activityto be performed. However, we did not find any evidence for which organization is more useful for familial caregivers. And so, we created two versions (A and B) of the prototype to test, A being organized by time and B by task.

We prototyped several potential layouts for the communication board as well as the features that we thought would be important to add.

Additionally, we wanted our design solution to be customizable. During our interviews, we noticed just how individualistic daily care plans need to be. Some seniors respond well to music therapy, while others prefer to be reminded of special moments from their past. Meanwhile, familial caregivers have different tasks they need to complete during their shifts. In order to meet each family’s needs, we chose to use magnets with tasks printed on them. We also included a few that are blank so families can fill them in with any task not included. This allows caregivers to plan their day/shift by choosing from these magnets and placing them on the board.

In order to address the physical burden that comes from emotional disconnect between the familial caregiver and senior, we included magnets with engaging activities. With these, family members will be prompted to spend quality time with their loved one in a more meaningful and engaging way. Alternatively, they can include more personal activities that their loved one responds well to using the blank magnets.

Next, we used sliding switches with a red underlay to signify incomplete tasks. When a caregiver finishes a task, they slide the switch to the right, covering the red. We wanted to use color to quickly convey to caregivers using the board if any task is in need of completion.

On each board we included a monthly calendar. This is primarily for caregivers to write down appointments or special events that would not be included in the daily care plan portion of the board.

Finally, we included two blank sections on the board. One is for notes that the caregivers can leave each other, while the other is a space to write down a shopping list.

Learning from User Testing

In order to get feedback on the two versions of our prototype, we returned to the caregiver support group. From this session, we noticed that there were a number of suggestions on smaller aspects of the boards.

SUGGESTIONS:

The shopping list should be removed since they have other ways they prefer to keep track of this.
The moveable switches signifying task completion are too novel. Seniors will want to adjust these out of curiosity.
Monthly calendar is unnecessary — families already have portable calendar options.
The magnets are too easy to misplace. Also, there is no place to store the unused ones.

POSITIVE FEEDBACK:

The non-digital aspect of the white board seems more usable to the caregivers in the support group.
Caregivers like the idea of having this board out for their loved one to see. Having a senior see their plan for the day would make them feel more knowledgable and content.

However, despite the fact that our board clearly had room for improvement, there was a general acceptance of the concept overall. And so, we decided that our solution was well grounded and proceeded to make our final iteration based on the feedback we received.

*Note: Due to time restrictions, we only iterated once on our prototype. Ideally, we would have gone through many iterations and tests before finalizing the design of our solution.

Final Design

The final iteration of the Communication Board was much simpler than the first prototype, with a time-based layout and no switches.

The final version of our communication board has several key changes:

We chose to use the time-based board design to make it more “shift-friendly”. Familial caregivers who take turns caring for their loved one will have more clarity when using a board that is organized by time of day, which coordinates to the natural shifts families take.
We removed the calendar and shopping lists because many of the caregivers that we talked to already had preferences for how they liked to keep a schedule.
We replaced the task magnets with stickers in order to provide more organization and prevent families from losing movable pieces.
We replaced the switches with checklists to minimize the likelihood of seniors fidgeting with them.
In place of the calendar, we added a date indicator and a daily quote to the board, as well as more activity suggestions beyond essential tasks, like walks, cooking, and games. This increases senior engagement and enjoyment of the board, as they can look forward to a new quote each day and choose their own activity for the day.

Reflection

The sustainability of the communication board is a potential concern for us. Since Alzheimer’s is a progressive disease, we tried to make this board as adaptable as possible for the changing tasks that a caregiver might be responsible for. Due to time constraints we weren’t able to test how useful this board is for seniors at different places in the progression of the disease.

Going forward, we would have liked to make the board more customizable for different users depending on their situation. If we had more time, we would have liked to research ways to make the communication board more culturally sensitive, and useful for caregivers of different cultural backgrounds. We would have also tested our board in a more realistic setting. Ideally, we would observe families using the board in their homes throughout the day.

Over the last 7 months, we have learned a lot as designers, particularly about the challenges of working with real-life stakeholders in a sensitive context. We realized early on that finding stakeholders willing to work with us and getting recurring interview subjects was going to be particularly difficult, and it affected our research and problem definition. If we could do it again, we would like to develop better communication with the stakeholders and form a relationship with them. One of the challenges we faced was that we were working with too broad of a problem, and we think that working closer with particular stakeholders will help with that.