The purpose of a Parkinson’s support group and the necessary commitment of relatives

23/08/2024, Family member & Carer, by Nina Breiteneder

Parkinson’s is a chronic, degenerative disease of the nervous system that affects millions of people worldwide. The diagnosis can be overwhelming and stressful for both those affected and their families. During this difficult time, Parkinson’s support groups can be an indispensable resource.

❔ But what exactly is the purpose of such a group, and how can it help those affected and their families?

Now that the summer holidays are coming to an end in most countries in the northern hemisphere and autumn is approaching, the summer break in the support groups is also coming to an end in most regions. From September onwards, more regular meetings usually take place again, which I would like to use as an opportunity to write about the purpose of regularly attending a Parkinson’s support group.

In my many years of active time as a Parkinson’s Disease therapy specialist in Austria, I have always been delighted to see that there are several Parkinson’s support groups in every federal state. Many of my patients were already regular visitors to these groups or even highly committed as active members, such as in the role of group leader.

On the other hand, when I had contact with patients, for example during my regular home visits, I have often found that negative attitudes towards attending a support group are also present. One of the most common arguments for someone not showing interest in it was always:

💬 “No, I don’t want to go there. Because then I can see from other sufferers how bad I will be feeling one day.
I prefer to stay at home.”

Other patients argued that they cannot go to the support group location alone and are dependent on external help. Therefore, they are not allowed to go. Yes, I understand these arguments and have a lot of understanding for it. Nevertheless, I have always tried to motivate and persuade my patients to visit their local support group, because I believe that this can only bring benefits for a Parkinson’s patient:

Community and support:

One of the most important functions of a support group is to create a space where people with similar experiences can come together. This promotes a sense of community and understanding. People with Parkinson’s often share similar challenges, fears and questions. By sharing experiences, they can learn from and support each other.

The emotional support that a support group offers cannot be overemphasized. Knowing that you are not alone and that others are having similar experiences can be incredibly comforting and encouraging. These groups provide a safe place to share worries and fears without fear of judgement or misunderstanding.

Education and information:

Support groups also serve as a valuable source of information. They often invite experts to give talks or conduct workshops. This can range from medical lectures by a specialist doctor who talks about the latest research and treatment options, to practical advice for everyday life from speech, physical, occupational or nutritional therapists. Sufferers and their families thus have access to up-to-date and reliable information that can help them better cope with the disease.

Practical help:

In addition to emotional and informational support, many support groups also offer practical help. This can take the form of joint activities, physical therapy sessions or even assistance with administrative matters such as completing applications for social benefits or medical support. Such practical help can make everyday life much easier for those affected and improve their quality of life.

Promoting independence and self-determination:

Another important aspect of support groups is promoting independence and self-determination for those affected. Through sharing and supporting each other, members are encouraged to take an active part in their lives and treatment. They learn to clearly articulate their needs and wishes and to stand up for their rights and well-being more confidently.

Social activities and friendships:

Self-help groups often organize social activities that help members take a break from everyday life and just have fun. These can be joint outings, sports events, art and music therapy, or simply social gatherings. Such activities not only promote physical and mental well-being, but also help to make new friends and strengthen existing relationships.

Let’s move on to the next point:

Getting our Parkinson’s patients to attend a self-help group.

The diagnosis of Parkinson’s is a major challenge not only for those affected, but also for their relatives. Life changes drastically and the daily demands can be overwhelming. At such times, a self-help group can be an important support for both patients and relatives. But as already mentioned above, not every Parkinson’s patient is immediately ready to accept this support. This is where relatives come in: their commitment and motivation are often the key to getting the affected person to regularly participate in self-help groups.

Understanding and empathy is the basis of support.

The first step to motivating a Parkinson’s patient to participate in a self-help group is to have a deep understanding of the disease and its effects. Relatives should inform themselves about the symptoms, progression and challenges of Parkinson’s. This knowledge creates the basis for empathetic conversations and gives relatives the opportunity to better understand the patient’s fears and concerns. Empathy is crucial. The patient must feel that his feelings and fears are taken seriously. Open discussions about the benefits of a self-help group and the common challenges can help to reduce possible reservations.

Relatives should use positive communication strategies to make participation in support groups appealing. Instead of applying pressure or making accusations, they should emphasize the benefits. These include:

Community: Meeting with other sufferers can reduce feelings of isolation and encourage new friendships.

Support: Exchanging experiences and tips can make dealing with the disease easier.

Information: Support groups often provide access to up-to-date information and resources.

Emotional relief: Sharing fears and worries can be therapeutic and reduce emotional pressure.

Another important aspect is the role modeling of relatives.

If relatives actively participate in the Parkinson’s support groups or accompany the patient, this shows their commitment and support. This can be particularly helpful if the patient is initially hesitant or anxious. Accompanying the patient to the first meetings can help the patient to feel more comfortable and get used to the new environment. This time together can also strengthen the bond and promote trust.

Attending a self-help group requires practical support and organization.

The daily life of a Parkinson’s patient can be significantly affected by the symptoms of the disease. Relatives can help by providing practical support to facilitate participation in support groups. This includes:

Transport: Arranging travel to meetings, especially if the patient has difficulty travelling alone.

Time management: Assisting in scheduling and keeping appointments.

Reminder: Regular reminders of meetings and their benefits.

The aim is to motivate people with Parkinson’s disease to regularly attend their local self-help group in the long term. In most regions, meetings take place monthly – except during the holiday periods in midsummer. Motivation to participate in support groups is not a one-time task, but a long-term process. Relatives should regularly talk to the patient about their experiences in the group and respond to any changes in their needs or preferences. Flexibility and adaptability are important to provide ongoing support and motivation for the patient.

My Conclusion

Of course, in a support group you meet with like-minded people. And yes, one patient is better, another a little worse. Everyone has to live with their own illness, which manifests itself individually – including in its severity. A Parkinson’s support group offers much more than just support in coping with the disease. It creates a community of people who empower, inform and encourage each other.

It offers practical help and promotes self-determination for those affected. But most of all, it offers hope and the knowledge that no one has to go through this journey alone. For people with Parkinson’s and their loved ones, joining a support group can be an important step towards a more fulfilling and self-determined life. If you or someone you know is affected by Parkinson’s, a support group could be just the thing to find support, friendship and new perspectives.

The involvement of loved ones is often the deciding factor in motivating Parkinson’s patients to attend support groups regularly. Through understanding, positive communication, role modeling, practical support and long-term motivation, loved ones can help patients reap the many benefits of Parkinson’s support groups. In a time of uncertainty and challenges, attending a support group can make a significant difference in the life of a Parkinson’s patient. With the right support and motivation from their relatives, those affected can discover this valuable resource and benefit from it.

I hope that you too can take the step – alone or better with a companion – to overcome the threshold towards a self-help group and become part of the Parkinson’s community. You will recognize the benefit and will certainly enjoy it.

I wish you every success and all the best!

Nina Breiteneder

International Qualified Nursing & Application Manager

My best friend's poetry album says that I already knew as a child that I wanted to be a nurse. And so it happened that after I got my university entrance qualification, I enrolled in the nursing school of a psychiatric specialist clinic in Düsseldorf (Germany)...