What ALS Focus Hopes to Learn from ALS Caregivers


ALS Focus recently launched its third survey, gathering data from ALS caregivers to identify the unique needs and challenges of ALS caregiving. Responses to this survey will help translate the caregiver experience into action and influence ALS programs and policy decisions. To participate in the survey, register HERE.

ALS Focus Director Dr. Sarah Parvanta detailed the questions her team is asking in the current survey during a recent episode of Connecting ALS. A portion of that conversation has been edited and condensed below.

The third ALS Focus survey focuses on a key constituency in the ALS community. And that of course, is the caregiver. Can you talk to us a little bit about the decision to center on caregivers in this third survey?
I was really excited about survey three and designing questions for caregivers specifically because of how important they are in the fight against ALS. Thus far we've had two Focus surveys that have been for people with ALS and their caregivers, but a lot of those questions have asked about the experiences of the person with ALS directly.

This time we wanted to give voice to caregivers: what their needs are, what kinds of programs would help them most and what their concerns are for themselves and their quality of life. And so being able to highlight how important their role is and how much they mean to this community, and for them to know that others are really looking out for their wellbeing as well. Not only people at The ALS Association, but also the people that they care for really, really are concerned about their caregivers and want them to enjoy their lives as well, because they're so appreciative of the care that they provide.

What can you tell us about the specific questions that we're trying to dig into as we move forward in survey number three?
When we first started working on selecting and designing questions for this caregiver survey, we met with our patient and caregiver advisory committee, who help with all aspects of ALS Focus, including question topics and the actual domains and issues that we want to cover. And it quickly became apparent that there were many different types of issues that are relevant for caregivers. And so, we started with a really long list of important topics that needed that caregiver voice to help us understand the frequency of these experiences and challenges that caregivers are dealing with. What we realized is that this is the first caregiver survey specifically, but it won't be the last caregiver survey.

So, we decided to narrow to a list of topics or a list of questions that were highly actionable. That was our goal with this first survey: every question that we choose needs to be one where action can be taken depending on what the data tell us -- what direction the data tell us to go. So, we decided to focus the questions on listing a wide range of programs, trainings, and services that are available, or at least that exist for caregivers. And we wanted to ask them, which of these programs and trainings do you use; and which ones, if you had to choose, which ones are the most important to you? So, we wanted to find out, what are people using right now? And if they had an ideal scenario where they had access to the types of programs that they would want, which ones would those be?

And those kinds of questions are really designed to tell our care services teams and those care services programs that The ALS Association provides: What direction do we need to go in now? These are the types of trainings our caregivers are saying that they need. Let's fill those gaps. Let's make sure those services are available, or let's enhance them and make them more accessible to the community. In addition to those questions about really tangible programs and services, we also wanted to ask about the psychological, and emotional and mental health side of caregiving. So, we ask questions about what caregivers’ greatest concerns in their roles as caregivers are, meaning time with their family, or having time for themselves. We really wanted to ask what's happening with you and what are you most concerned about? And then we ask about their quality of life as well. So, what we've heard from our patient and caregiver advisory committee was, caregivers really want to know how they can provide the best care.

Also, we want to know how we can care for our caregivers and make sure that they're okay too, because they have a role that is so important. And they're putting a lot of time and energy into that. And they're doing it in a very selfless way, in many cases. And they need some attention on them as well, at least from our perspective. Given the role that they have, they might not necessarily put their own needs before the needs of the people they're caring for. So, we wanted to find a way to help them provide better care because that's very important to them. And then we also wanted to find ways to help improve their quality of life, because that ultimately helps them provide better care as well.

For caregivers who maybe aren't currently actively caregiving, who have either lost someone in the past or are no longer involved in care. Is there a reason for them to participate as well? Should they consider taking the survey?
Yes, definitely. We invite former caregivers to participate in all of our Focus surveys, and this new survey on caregiver needs is designed for them as well. So, it asks about the programs that were most important to them when they were providing care. So, they, in some ways, have a very wide range of experiences in perhaps providing care at the beginning of ALS diagnosis and then all the way through that ALS journey. So, their experiences can really provide important information about what kinds of services caregivers need all across that ALS journey. That was really important to our patient and caregiver committee, that we understood how long someone had been providing care, because their needs might differ over time. And so, we think that those experiences of past caregivers are so important, and we want to hear from them. They remain very important in this community.

You can listen to the full podcast episode with Dr. Sarah Parvanta on Connecting ALS HERE.


Submitted by: Charlotte G. on Thu, 02/25/2021

My husband has ALS. It is progressing fairly rapidly. He'd like to donate his body to researchers studying ALS. We live in NH. Dartmouth just informed us they do not accept a body for a particular type of research. They suggested we look elsewhere. Suggestions?

Submitted by: Amy L. on Fri, 02/26/2021

Hi Charlotte, so sorry your husband is living with this terrible disease. Your local chapter can provide information specific to your area. Find their contact info at als.org/chapters.

Submitted by: Donna W. on Thu, 03/04/2021

ALS is a horrid disease! Lost my husband after a 14 yr.old battle in sept. It was a very hard situation to handle , I was his caregiver 24/7 for the last couple years with little help from family. He was a trooper so I needed to be too. Our Western PA ALS Chapter was the utmost support. The biggest challenge for both, my husband and I was not having family support or their help. So he had no break from me or vice versa. I vowed that he was staying here at home and we made it happen. As hard as our journey became, I wouldnt of changed it. The only change we always hoped and prayed for was a cure!

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