The role of care partners of patients with movement disorders
Essential facts for patients

Who is a care partner?

Is someone who provides assistance to an individual with a health condition to meet their self-care deficits.¹ This role is often fulfilled by a family member but may be anyone who partners with a patient in their care. 

What is the role of the care partner?

• Their role may vary widely. Their role starts with the diagnosis and its acceptance and understanding. It continues with incorporating everyday changes for optimizing the daily activities, quality of life and care of the patient. Care partners learn about the disease to ask the right questions and notice patterns. They provide support with medication adherence and preparation for clinic visits and serve as an advocate for the patient with healthcare personnel and insurance providers. 

How can care partners help to prepare for visits with healthcare providers?

• Care partners can aid in arranging and keeping track of appointments. They can also communiate necessary information to healthcare providers and often provide a unique perspective into the day-to-day life of the patient. This insight can assist healthcare providers to determine the best course of action, especially in instances that are not noticed by the patient, or that the patient may be too embarrassed to discuss. 

How can care partners prepare for appointments with a healthcare provider?

• Knowing medication names, doses, and timing
• Communicating symptoms and concerns related to the patient’s disease
• Conveying safety concerns including but not limited to: balance and falls; swallowing difficulty (e.g. choking or coughing with food/fluids); mental health issues; presence of dangers in the home (e.g. firearms, unsafe stairs); unsafe practices of the patient (e.g. leaving the stove on or the water running, impulsivity, driving issues, and more)
• Explaining the patient’s environment, resources utilized, day-to-day routine, and support network

How can care partners can assist during appointments?

Care partners additionally help by listening to the provider and taking notes to ensure information and recommendations are rememberedand followed

• Care partners are often involved in discussions with healthcare providers and is important to establish the exact role of the care partner align with the desires of the patient. It is important to discuss these roles with the patient and with their healthcare providers, including:
  • Proxy access to the healthcare patient portal
  • Documentation of permission for the care partner to speak to healthcare personnel about the patient’s care
  • Formal healthcare power of attorney documentation as needed

 

• Care for the care partner:
• Being a care partner can be exhausting, and you are not alone. As care partners are typically close to the patient, they may suffer with the diagnosis silently. Care of the patient may get complicated with feelings of resentment, regret, anxiety, depression, fatigue, isolation, and/or guilt; these are all common. 
• Care partners should always let the patient’s and their own healthcare providers know when they are struggling. Avaiable resources for care partners include posible support groups, respite care, and other resources to address and prevent burnout. 

All neurodegenerative disorders are progressive but the speed of progression is unique to the individual. Care partners can speak to the healthcare provider about things to watch for and what to expect. Helping the patient to prepare for the future- for example by outfitting the living space to prevent falls- can help them to maintain independence and health for longer.