Tips for Sjogren’s Syndrome Caregivers

Tips for Sjogren’s Syndrome Caregivers

Primary Sjogren’s syndrome (without any accompanying autoimmune disorder) is relatively easier to manage than the secondary type, which usually occurs in individuals already diagnosed with autoimmune diseases such as rheumatoid arthritissystemic lupus erythematosusscleroderma, or polymyositis.

Dealing with secondary Sjogren’s syndrome can be challenging, not only for the patients but also for their caregivers. Here are some tips for caregivers to ensure that they maintain their own well-being while meeting the needs of their patients.

Know the disease and its symptoms

Updated information about Sjogren’s syndrome, its symptoms, and available and upcoming therapies is available on our website. If you’re a caregiver, keep yourself abreast of these developments as they may be helpful in planning your caregiving activities, arranging doctor’s visits, or even getting the patient enrolled in a clinical trial.

Prevent environmental triggers

Sjogren’s syndrome can be triggered by environmental factors such as allergens and bacterial or viral infections. Therefore, find out the patient’s allergies and avoid triggers as much as possible. For example, if you know that the patient is allergic to fur, keep them away from animals.

Develop healthy interactions with the patient

Your interaction and conversation can offer much-needed comfort and reassurance to the patient. Talk to them not only about the disease but also about life in general, and your common interests, such as sports, or certain books or movies. Over time, you will get a sense of topics of mutual interest, which should help you to further enrich your relationship with your patient.

Be conscious of your own health

It is easy to get fully involved in caregiving duties and, in the process, forget about your own health. Remember that your well-being is important to enable you to effectively meet the needs of your patient. Eat well, stay hydrated, get proper sleep, and ensure that you attend to your own medical needs.

Allow yourself time to rejuvenate

Caregiving can be demanding and stressful. Take frequent breaks so the stress doesn’t become overwhelming. If you are feeling sad or frustrated, engage in other activities such as solitary walks or spend time with friends to relax and rejuvenate.

Divide your caregiving activities into achievable goals

Since Sjogren’s syndrome has no known cure, management of symptoms is long term, which can quickly become overwhelming. Setting short and achievable caregiving goals can motivate you and the patient, but keep in mind both your health and that of the patient’s, and plan accordingly.

Seek help when needed

Although Sjogren’s syndrome is a rare disease, realize that you are not alone. Contact organizations that offer support and networking opportunities for patients and caregivers. Some of these include the Sjogren’s Syndrome Foundation, Arthritis Foundation, and Swedish Sjogren’s Syndrome Foundation.

 

Last updated: Oct. 22, 2019

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Sjogren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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