2013

Service Design | Communication Design

A TRIP THROUGH ALZHEIMER’S

University graduation project

Client: Fundación Alzheimer Colombia; Hospital San Ignacio.

With very little allies, caregivers remain in the background of the picture. A Trip Through Alzheimer’s is an attempt to improve the quality of life of informal caregivers of patients with Alzheimer’s disease. It’s a guidance and support platform, reinforcing their role in the community, giving them a sense of involvement and validating their work.

The initial aim of the project was to develop a product or service for informal caregivers of patients with Alzheimer’s disease. 

The solution is an easily replicable guidance and support platform to help caregivers in the various stages of the disease: starting with diagnosis, when the caregiver receives an introductory document to Alzheimer’s.

After that, the different foundations and caregivers continue the labor by cementing support mechanism in the form of talks and seminars to address different issues of the disease, as well as organize workshops so the caregivers can interact and make connections.

After several amounts of data were collected and analyzed, the brief of the project became more specific: Develop a support platform to guide and reinforce the caregiver’s role in the system, generating a sense of community and belonging.

The requirements of the project were:

• Evidence the value of the caregivers’ work.

• Actively involve the rest of the family.

• Provide tools and preparation to counter the disease.

• Encourage communication and unity between caregivers.

• Return the patient’s identity so he/she’s not perceived as a problem
  

Acknowledging the caregiver’s work and experience helps their efforts transcend to nurture the whole community. This generates union, support and news tools that emerge when knowledge and experience are shared.

DESIGN PROCESS

I began with no context whatsoever about Alzheimer’s disease. The first stages of the process were aimed at understanding the realities, needs and motivations of caregivers in order of developing a useful solution to improve their quality of life.

One of the exercises used for investigation asked the caregivers to draw the disease. A pattern emerged from this: most of them depicted a path, a process that occurs amongst several stages in time. In accordance, the conceptual narrative of the project was structured as travel guide through the disease.

In my research I found that most caregivers were females who were either the daughters or spouses of the patients. In Colombia this labor has become feminized to the degree that in counseling sessions there was almost none male presence and even less interest. In addition, another conclusion was that in most cases the level of experience with the disease was close to none.

INSIGHTS

“We knew she was going to lose her memory, but I don’t think we were prepared for what happened.” This was a very important insight as it shed a light on the fact the caregivers don’t fully understand the scope of the disease at the beginning and so they usually aren’t prepared to handle it effectively. Additionally, the symptoms of the disease make it hard to recognize and remember the true identity of the patient, generating confusion and frustration.

The rest of the members of the family, who don’t experience the daily realities of the disease, put pressure on the caregiver to act more positively or to treat the patient different. 

There is not usually a conscious decision to become a caregiver, rather, someone assumes the role organically. This lack of planning and preparation generate several traumatic experiences dealing with the disease which could be avoided if recognized from the beginning

As the patient becomes increasingly dependent, the caregiver progressively loses personal time, to the point where they are with the patient 24 hours a day.

SOLUTION

By working hand in hand with different institutions providing guidance to the caregivers, the service was designed to be a platform where a community could flourish, giving them a sense of belonging and support. The most valuable information came in the form of first hand experiences of other caregivers more experienced in handling the disease.

The solution articulates in three stages:

The first is awareness, given the benefits of an early diagnosis this step encourages families to recognize the symptoms and search for help to discover or rule out the disease. This is accomplished by a communication strategy built around key meeting points like pharmacies and hospitals.

The second part is orientation. When the diagnosis occurs, the caregiver receives an introductory document to the disease to provide context and paint a scenario of the challenges ahead as well as to provide tools to surpass them. The information was compiled and edited from a different of different source, including medical journals and testimonies of past caregivers. Once the information was complete, it was translated to a visual language easy to understand and with a friendly tone to reduce the impact of the data being communicated. From this moment onwards, the caregiver becomes a member of the support group that continues to assist throughout the disease.

The last stage of the service is follow up. Given that Alzheimer’s can last up to 12 years after diagnosis, this part of the service articulates the different organizations that provide guidance to patients and caregivers in one cohesive network of support. The newcomers are assigned mentors and the more seasoned individuals become experts who share their knowledge and experiences. Throughout this time different activities are held in order to cement the community’s relationships and to strengthen the communication between its members.

The engine of the whole system is called “Care Thinking”. In order to fully optimize the potential of the solution, an innovation mechanism was designed, where caregivers and professionals from different fields like architecture and design gather in co-creation sessions where wisdom and ideas meet to generate usable tools that can be appropriated by the members of the community at the beginning of the cycle.