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The Role of Alzheimer’s Disease Caregivers

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Jenni Doris

RN Care Manager

Network Health

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According to the Alzheimer’s Association, more than 16 million Americans provide unpaid care for people with Alzheimer’s disease and other types of dementia. These caregivers provide an estimated 18.5 billion hours of care valued at nearly $234 billion. Many of these caregivers are family members – typically a spouse or adult child or grandchild.

During the early stages of the disease, the role of a caregiver is usually limited to checking in or helping with small tasks. For example, balancing a checkbook. But as the disease progresses, the role increases and becomes more involved. Eventually, people with Alzheimer’s disease need help bathing, dressing and preparing meals, and it soon progresses into needing help remembering to eat and use the bathroom. As the brain begins to shut down, other organs in the body stop working the way they’re supposed to leading to health issues such as incontinence. Caregivers end up seeing their person at his or her most vulnerable.

One of the biggest challenges caregivers face is grieving the loss of a person even while he or she is still living. The person is still physically here but their mind is someplace else. It can be tough having to make this adjustment within relationships – for example, having your wife go from being your partner to your dependent. It becomes even more difficult once the person forgets who you are and memories are lost. It’s important to recognize your loss and allow yourself permission to go through the grieving process.

As a caregiver’s role increases, it becomes more physically and emotionally demanding. Here are some tips to stay strong during these challenging times.

  • Do regular self-checks – It’s helpful to pay attention to how you’re feeling and not push those feelings aside. Remember – it’s okay to feel sad or frustrated. Refusing to acknowledge these feelings can add to the burden of caregiving.
  • Take time for yourself – Many caregivers feel selfish for taking time for self-care but it’s critical to take time every day to eat healthy meals, drink enough water, exercise, get enough sleep and be present for other family obligations. Think about it like you would an oxygen mask on a plane. You must put your own mask on first. If you don’t take care of yourself, you’ll get to the point where you’re unable to care for your loved one.
  • Consider using respite care – This type of care gives you the opportunity to be away while knowing your loved one is being cared for by a qualified caregiver. You can either opt to have someone come into the home for a few hours a day or opt for a short-term stay in a long-term care facility. It’s a great way for caregivers to have some time off for themselves to recharge and refresh, so they can ultimately provide better care over time.
  • Find a caregiver support group – It can be helpful to talk with others who are going through a similar situation. Being able to share your frustrations, worries and concerns with people who understand first-hand what you are going through is so beneficial. Hearing others share their own coping strategies may also help you find different ways to cope. Finding a good support system can help you feel less overwhelmed as well as provide a resource for more information.

Nurses also play an essential role in helping Alzheimer’s disease caregivers. They provide education and explain the best ways to do certain things – for example changing adult briefs. They are also able to help you understand the changes your loved one is going through and check in to make sure you’re taking time to care for yourself. It’s helpful knowing there’s someone on your side who is there for support and encouragement.

Network Health has nurse case managers who reach out to members who are newly diagnosed with Alzheimer’s disease to help them access resources as well as help the family through the next steps. Making use of this benefit can help a caregiver feel supported, less overwhelmed and empowered to give the best care to their loved one. To learn more, visit us online.

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