Coping tips for couples

After a diagnosis of early-onset Alzheimer's, spouses or partners often feel a sense of loneliness or loss as they face the possibility of spending many years without an active partner.

Losing the romantic component and changing to a caregiver status also complicates the relationship. Try to:

  • Talk about what kind of help you need from each other. Communicate about changes you're experiencing and ways in which your needs also may have changed. Don't be afraid to ask for help.
  • Continue participating in as many activities with your partner that you currently enjoy and adapt as necessary. Or find new activities that you can enjoy together.
  • Keep a folder of resources you may need as the disease progresses.
  • Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.

How to involve kids

A diagnosis of early-onset Alzheimer's can also be difficult for children, who may not understand. Children may blame themselves, become angry or react in any number of ways. Try to:

  • Find activities you can enjoy together.
  • Stay engaged and talk with your children honestly about what you're experiencing.
  • Find a support group for children, and invite your kids to some of your counseling sessions. Make your child's school counselor and social worker aware of your condition.
  • Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They'll appreciate your sharing your wisdom and memories.

Financial issues

People with early-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers.

Some medical benefits and many social-support programs won't provide assistance unless the person with Alzheimer's is older than age 65. Younger people may need special waivers to get into such programs. What you can do:

  • Talk with a financial planner and an attorney to help you plan for your future financial needs.
  • Ask your employer whether early retirement is an option.
  • Explore what benefits may be available to you through Social Security, Medicare or Medicaid.
  • Organize your financial documents and make sure your spouse or partner understands and can manage your family's finances.

Resources for support

Key elements of Alzheimer's care are education and support. This is especially true given the unique challenges of early-onset Alzheimer's. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt.

Remember, you're not alone. Many resources are available to assist you, your family and caregivers to cope with this disease. Options for support may vary depending on where you live.

In the early stages of the disease, be sure that you and your spouse or partner do research and establish a plan for managing the progression of your condition. Knowing you have a plan and have identified support and resources will help everyone in the future.

March 29, 2017