Family / Caregiver Issues

Resources to address the challenges facing the family caregiver while providing strategies to assist them.

Caregiver’s Role in Caring for People with Parkinson’s

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As a caregiver or care partner, you may be the spouse, sibling, child, or other loved one of someone with Parkinson’s disease (PD). Caregiving is defined

Use your natural strengths to aide you in your new role as a caregiver.

aseverything we do to assist a friend or relative due to that person’s illness or disability, as well as what we do for our own health. While PD is unexpected and you didn’t choose the role of caregiver, it doesn’t mean you can’t be good at it. Take stock of your natural strengths and how they can be used in caregiving.1

Preparing for your role as caregiver

Your role as a caregiver will change as your loved one’s disease progresses. People with late stage PD need more assistance with everyday activities than those in early stages of the disease. Learn about the disease and how it progresses to create a plan for care, including what outside assistance you may need and when. While learning about PD, remember that each person has their own unique experience, and not everyone experiences every symptom.2

Facing challenges

There are a variety of challenges caregivers face, including financial, health, and emotional. The caregiver is often the health care advocate for their loved one, manages medications and scheduling, and assists with daily care, like hygiene and getting dressed. In addition, the caregiver provides emotional support for their loved one, as they deal with living with a chronic, progressive disease.3

The progression of caregiving in PD

The role of the caregiver in Parkinson’s disease (PD) is ever changing, with the demands increasing as the disease progresses and symptoms worsen. In the early stages of the disease, caregivers are helping their loved one cope with the diagnosis and learning how to manage the medications. Caregivers may encourage and support their loved one in completing daily physical therapy exercises and assist them due to their slowness in movement.4

As an individual’s disease progresses into mid-stage, the caregiver’s duties and burden significantly increase. Fatigue and excessive daytime sleepiness may derail daily plans, and frustrations around communication increase.1

In the late stage of PD, caregivers face significant responsibility and challenges. Their loved one may have significant mobility impairments, and caregivers often provide much hands-on assistance. Many people with late stage PD experience freezing episodes, sudden but temporary inability to move. Freezing episodes can contribute to falls, and fall prevention is important in the late stage of PD. Many assistive devices are available to help people with late stage PD with eating, dressing, and walking. Late stage PD may also mean changes to the way a person thinks, including forgetfulness, confusion, and sometimes, dementia. It is important to remember that not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.1

Care for the caregiver

Research has shown that as PD progresses, the strain on the care partner or caregiver also increases. While the caregiver is generally focused on providing assistance and support to the person with Parkinson’s disease (PD), the caregiver also needs support. Taking time away from caregiving duties, maintaining social connections, and asking for help from others are important steps to help the caregiver cope with their additional responsibilities and stress.1,4

Information courtesy of ParkinsonDisease.net


Medical Press: Five things to know when a loved one is diagnosed with Alzheimer’s

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Seeing the personality and whole being erased in loved ones with Alzheimer’s disease can be a heart-wrenching experience.

Learn to manage caregiver stress and overcome challenges as you help your family member face Alzheimer’s.

Mental health expert Maria Aranda, executive director of the USC Edward R. Roybal Institute on Aging, doesn’t want you to go through it alone. The associate professor at the USC Suzanne Dworak-Peck School of Social Work distills her 30-plus years of helping caregivers manage stress into five critical categories you need to master as you help your family member face Alzheimer’s.

How should I interact with a family member who has Alzheimer’s?

Keep in mind that Alzheimer’s affects each person differently at different stages, and what works at the early stage may not work later.

Don’t define your loved ones by their disease. Treat them like an adult, not a child. Don’t talk about them within earshot as though they don’t understand what’s going on. Respect their ability to communicate what they feel, believe and want.

Try to see things from their perspective and use humor to lighten the mood. Don’t give too many requests at one time. Don’t get stuck on having them see your side of things. Focus on the feelings behind the words.

Establishing daily routines can be a huge help. Identify what routines make sense and be flexible when they don’t work out as planned.

Read more tips here.

 


Caregivers Find Support With AARP Caregiving Guides

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Caregiving guides from AARP help you take on your role of caregiver with more support and knowledge specific to your care journey.

If you are a caregiver, you’ve taken on one of the most important and challenging roles you’ll ever have. The AARP is here to help. Their website has a section devoted to caregivers with all sorts of resources, tools and forums, as well as the following special guides, to help you in your specific caregiving journey. Choose from:

Help for First-Time Caregivers. The life of a caregiver can be daunting. Read and apply this 5-step process to ease your transition into caring for a loved one. Get started.

Help Caring for a Loved One at Home. Follow this 5-step plan to overcome safety and health care challenges that come with caring for a loved one in their own home (or yours). Get started.

Help Caring for a Loved One with Cancer. Many caregivers care for loved ones who have cancer. Read these resources and tips on how to provide this special type of care. Get started.

Help Caring for a Loved One with Dementia. Many caregivers care for loved ones who have dementia or Alzheimer’s. Read these resources and tips on how to provide this special type of care. Get started.

Help for Common Caregiving Conflicts. Being a caregiver can be stressful when siblings argue, care is refused or money becomes an issue. Diffuse conflict with these helpful tips. Get started.

Help for Long-Distance Caregivers. Many caregivers care for loved ones who live far away. Read these tips on creating a solid care team and maintaining good communication. Get started.

For more caregiving information, visit AARP caregiving. 


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