Fresh Research Q&A: Intervention for People With Primary Progressive Aphasia and Their Spouses

Dr. Regina Jokel has provided services for patients with primary progressive aphasia (PPA) for 25 years. In addition to practicing as a speech-language pathologist at the Sam and Ida Ross Memory Clinic at Baycrest Hospital, she is an assistant professor at the University of Toronto and a clinician associate at the Rotman Research Institute, where she conducts research on signs of dementia in written language and novel intervention approaches to PPA. For her latest study, Dr. Jokel developed a group intervention program for people with PPA and their spouses with funding from the Sam and Ida Ross Memory Clinic. Two SAC student associates, Sara Lass and Krista Howarth, assisted with program implementation.

Dr. Jokel spoke with Felicity Feinman, SAC’s Communications Officer, about the new program and her research into PPA.

In the Q&A below, ‘SAC’ indicates Felicity and ‘RJ’ indicates Dr. Jokel. Note: this interview has been edited for clarity and brevity.

Dr Regina Jokel

SAC: What was the process for developing the PPA program?

RJ: I selected the first five clients and their caregivers (all of them happened to be spouses) from my waiting list. Everyone wanted to participate, so, I met with the clients and spouses together for about two hours and I asked them what they would like to accomplish and how we could maximize the time we had. They were very forthcoming with their suggestions and ideas. They told me they wanted education specific to PPA and some counselling. They also said they would appreciate some language therapy. Subsequently, all those aspects were incorporated into the 10-week program.

SAC: What is the biggest challenge you faced in your research?

RJ: Generally speaking, the biggest challenge is always funding. Other aspects can be managed. With this particular project, everything went quite smoothly. No one missed a session. Some people were travelling an hour or an hour and a half each way to attend. That tells you something about the need for PPA intervention and the participants’ motivation levels.

The biggest challenge in this particular study was probably talking about difficult issues. That was a challenge for all of us. We had to talk about changing roles in the family. Suddenly, husbands or wives who were breadwinners had to relinquish that dominating role, while somehow adapting to the fact that from now on, they will need some assistance themselves.

There was also the issue of progression of the disease. The spouses asked me to meet with them for about half an hour before the group sessions started. They wanted to hear everything they needed to know, without their spouses with PPA being present, so they could have time to digest. Even though they knew that the disorder would progress, it was not very easy for them to hear the fact that their spouses may lose language all together. They were not really aware that other cognitive skills would also decline. When they received their spouse’s diagnosis from a neurologist or family physician, they were told that “language will decline”, but no one ever told them in any detail that other cognitive skills would eventually decline as well. So, I think that was difficult for the loved ones to hear, and for me it was a challenge to convey that information.

SAC: Why did you choose to work with an interdisciplinary team?

RJ: The number and the respective fields of the people who provided support to the program were dictated by the needs of my clients and their spouses. They told me whom I should invite. I had my own ideas about who should come and talk to us. From my list, group participants selected the professionals that they thought would be most helpful to them. I had a nutrition scientist, who came to talk to us about a brain-health-friendly diet. I also had a neuropsychologist who talked about cognitive changes and a clinical psychologist who highlighted the benefits of cognitive behavioural therapy. I invited a neurorehabilitation scientist who came and talked to us about current research on non-invasive brain stimulation in PPA. In addition, a social worker collaborated with me on an as-needed basis. She was available every week for both group and individual counselling. A neuropsychiatrist came to talk about potential depression in both spouses and clients with PPA and effective ways to deal with it.

SAC: How did you evaluate the effectiveness of the program?

RJ: I used a spousal questionnaire and the ASHA Quality of Communication Life Scale. Those were two major questionnaires that were self-assessment-driven. They were administered before and after the program. I also evaluated the ease and success of communication strategies that were taught and practiced in two different sessions: at the beginning and end of the program.

SAC: Can you summarize the preliminary results of your research?

RJ: The most surprising and pleasant finding was that almost everybody improved — clients and spouses alike. You need to remember that we are talking about a progressive disorder, so maintenance is usually what you are aiming for. When you see improvement in addition to maintenance of therapeutic gains, that is a huge bonus.

The spouses told me that they were better prepared for the future. Their knowledge of PPA has improved and, as the result, they are better equipped to manage the psychosocial issues and communication challenges related to PPA. They can problem solve a little better now and they are a little bit more comfortable talking about their spouse’s PPA. There was a statistically significant difference between pre and post-intervention in these areas.

With the clients, there was a trend in terms of improvement of quality of life. If, within a 10-week program, you can actually see some kind of improvement —whether it is statistically or clinically significant — I think it’s absolutely fantastic.

SAC: How do you think your research demonstrates the benefits of intervention in a progressive language disorder?

RJ: This is evident through both self-reporting and objective measures. I had a control group that did not get any intervention and I found that there was a statistically significant difference on every single measure between the control group and the program participants, pointing to the fact that those who participated in the program actually benefited from the program.

I knew from my past research that every time I provided intervention for a person with PPA, there was never a single client who would not benefit from it. In the face of losing your language, you work as hard as possible to keep it. My clients have always been extremely devoted to therapy.

SAC: Why do you think family involvement is so important in PPA intervention?

RJ: I think family involvement is important in intervention in every single disorder. It’s just probably somewhat more important in progressive disorders, because, at the end of the day, it will be the family who will carry the brunt of all the changes.

Obviously, for the family, most of the time, the most important thing is to keep their family member at home for as long as possible and independent for as long as possible. So, it’s important for the family to learn about all the aspects of progression, whether it’s cognitive decline, language decline or strategies they can apply to everyday situations. It appears that the combination of education, counseling, language therapy and communication strategies within one single program works very well.

SAC: What do you hope clinicians working with clients with PPA take away from your research?

RJ: I think that they will understand the need for simultaneous intervention for spouses and clients with PPA. I hope clinicians will be encouraged to work with people with PPA and maybe even contribute to clinical research. There are tons of things about PPA that have not been discovered or documented yet.

Click here for a list of Dr. Jokel’s previous publications.