Caregivers of ALS Patients Also Burdened by Disease, Study Reports

Caregivers of ALS Patients Also Burdened by Disease, Study Reports

Caregivers play an important role in the treatment and support of people with amyotrophic lateral sclerosis (ALS), although that role is not always appreciated or regarded by researchers. A recent study focused on the impact of caregiving on those who take care of people with ALS, highlighting how the disease affects both patients and those who care for them.

The report, “Caregiving in ALS – a mixed methods approach to the study of Burden,” was published in the journal BMC Palliative Care.

Investigators led by Miriam Galvin of the School of Nursing and Human Sciences, Dublin City University, wanted to understand the burdens and the types of difficulties encountered by caregivers of  ALS patients.

They interviewed  81 caregivers, mostly women (70%), spouses of ALS patients (72%), or their adult children (22%), using open-ended questions to assess psychological distress and burden, and to identify which aspects of caregiving were the most challenging.

Through a “mixed methods analysis” (using both qualitative and quantitative methods), the researchers identified common consequences that included lower quality of life, psychological distress, and long hours spent caregiving, from physical tasks like managing reduced mobility to personal care. Other impacts included changes and limitations in relationships due to the practical constraints of caregiving.

Some caregivers felt a lack of freedom, restrictions on their time, and relentless responsibility. Others spoke of a loss of self-identity because of the demands. Frustration, fear, stress and uncertainty were commonly reported, and affected the caregivers’ emotional and social well-being.

Investigators noted that a better understanding of caregiver burden in ALS is essential. “Understanding the components of burden and the difficulties experienced as a result of caring for someone with ALS allows for better supporting the caregiver, and assessing the impact of burden on the care recipient,” they wrote.

They concluded: “People with ALS, and partners of people with ALS experience loss … Our findings illustrate that loss for caregivers includes empathising with the loss experienced by the patient, the loss of time to themselves, and sense of loss in the reconfiguration of the patient-caregiver relationship. Exposure to the suffering of a loved one can directly influence caregivers’ emotional experiences and subsequent psychological and physical health.”


  1. D says:

    Really? They needed to spend money on a study to find out caring or someone with ALS is stressing and depressing? It’s impossible actually. The caregiver loses everything. They give up everything to care for their PAL who is never going to get better, only worse, and watch them die a horrible death. So in the end you lose everything. This is why I have chosen not to do it. I have sent my husband to live with his family. This disease will not take us both.

    • Son of a PAL says:

      Hmmm, wow.

      Isn’t a husband “family”?

      Do these words sound familiar?

      “….for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, till death us do part.”


      John Lennon

      In any case D, if you haven’t heard, no one gets out of here alive.

    • Erin says:

      I totally agree with Julie and D – caregiving is one thing but when it comes to an ALS patient that is 100% disabled (can’t do 1 thing for themselves) and they choose a feeding tube or ventilator – that’s too much to ask of ANYONE (spouse or family) to care for them. That is not “in sickness or in health” it’s “I’m going to selfishly stay alive with whatever medical device I can and you can just suffer along with me!” That is NOT Gods plan – it’s medical intervention which is prolonging the inevitable at the great expense of everyone around them. I have seen it rip families apart while the ALS patient feels entitled to the sacrifice of their families giving up their lives for them. It’s wrong! If the person chooses to use artificial means to stay alive that’s their choice, however they don’t have the right to steal the lives of everyone around them – it’s extremely selfish. Not to mention that hardly any nursing homes (if you can afford it) will take them. Doctors, nurses and social workers should speak truthfully to these patients that make the choice to take down their families – truth is sadly – they are a huge burden and need to understand what they are asking of people is monumental. Medical teams should not keep stringing them along with false hope, all for financial gain. Make no mistake about it – Healthcare is a business; sick people make hospitals money, healthy people don’t. We all have been given the gift of life and should live our lives to the fullest- when your time is up, IT’S UP! Someone else’s choice should not take our lives too. It’s time to get real.

  2. Patrick says:

    D, as a pALS your comment both frightened and horrified me. I sincerely hope your husband receives the support and care he needs and deserves. I am certain you will be fine.

    • D says:

      My husband is getting great care. Much better than if he was just here with me alone. I have completely fallen apart because of his diagnosis from exhaustion and depression. I am not alone in this I assure you. I speak to CALS every day that have taken on way more then they can handle and are suffering greatly. One caregiver I know tried to kill herself because she just couldn’t take it anymore, and she has small children. There is simply not enough support for the people caring for their PALS. For both our sake, he had to go live with his family.

      • Julie says:

        Oh gosh I agree with this… I’ve been caring for my mom 8yrs on the ventilator with als and I’m so exhausted I don’t even want to live some days. It’s horrible what some of us go thru all while working full time too…no time with my granddaughter etc… work and mom, that’s all I do. Do it several years and I bet you’ll change your minds. If they’re on a vent they are choosing to carry on at our expense as well as their own.

  3. Kit says:

    I agree Patrick! I am a caregiver and though my life sucks at times I would never ever abandon my husband or shove responsibility onto another person. Why get married if it’s only for better and not worse? Jeez! Selfish much?

  4. Pauline Jepson says:

    I care for my husband 24/7, yes it is horrible to watch him disappear in front of me and his family. But i took vows, and when i took them i meant every word. I love my husband more every day for the way he shows strength in other ways, yes, his muscles are weak, but his will is stronger every day. I cannot imagine walking away from him, even in the toughest days, and there are a lot of those. When he is feeling good and i see glimpses of his old self, it makes all the hard work on my part worthwhile. Tough yes, but what he has to go through, his worse then anything i have to go through.

    • Sharon Sinanan says:

      Well said Pauline, I am in the same position and I agree with you whole heartedly. What he is going through is much worse than what i have to go through. And what makes it worse is he knows it’s a burden on the family AND THERE IS NOTHING HE CAN DO TO HELP. It tears him up too. He did not bring this on himself so we have to support him and give him strength through this horrible journey.

      • Tim Bossie says:

        This disease is terribly hard on everyone involved. It is so important to keep a perspective on things while battling each day. Loving each other is the only way that you can possibly bare through each day. We love your attitude and hope that your words can encourage others in the same situation.

    • Jerry Sheehy says:

      I admire you.
      People that have never been through this horrific disease can never understand.
      When my wife was finally diagnosed, about a year after the symptoms presented, and hence after I had been caring for her for just over a year, I received a call from a nurse at the University of Washington Medical Center, she said ” you don’t know me, I don’t work in the ALS clinic, but I heard about what you are doing, and I just wanted to say thank you. I responded, “you don’t need to thank me.” She replied, “yes I do.” Then she asked me “if I knew how many spouses and family members abandoned their loved ones upon this diagnosis?” About 95%! Before saying goodbye she said, “I just hope that when this is all over that you can be whole again.”
      Five years later I am still working on that!
      I truly do admire you Pauline, and you are in my prayers. God does not give us a burden that we cannot handle, so apparently, we are the strong!

  5. Patricia says:

    This is a no judgment zone! It is a horrible disease and I don’t know what I would have done if my husband was not a veteran, and therefore eligible for inpatient care at the brand new hospice unit. I think I would have lost my mind.
    Not everyone can do it….please, you don’t know what anyone has been thru before they encountered this disease….just keep loving your person with ALS. The VA made that possible for me.

    • Tim Bossie says:

      Absolutely! We are so glad that you are able to get the help your husband needs through the VA. That is such a wonderful blessing in itself.

  6. Alfie Pasthing says:

    My husband was dx 10 years ago, moving slowly, but now he has lost the use of Hands, and I feed him and bathe and dress him, and that’s ok, He still walks with no problem, gets winded short of breathe, that’s when we use a wheelchair. We feel fortunate we can weather the storm together. He is with the VA, which has been a godsend for us. He is one of the fortunate, still loves to eat, swallows ok, but loss muscle. I wouldn’t think of sending him anywhere as long as I breathe in my body

    • Tim Bossie says:

      Thank you for the comment and sharing your experience as a caregiver to your husband. We are so happy to hear that you gladly help him through this difficult time. 10 years is an amazing commitment and you being there must make this much easier for him. 🙂

  7. Michelle Kafafi says:

    My husband is trying to do everything. He gave up his job and all to take care of me. It is sad because no one else will help. We need a cure. No excuses. We need and deserve a cure

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