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Understanding Alzheimer’s Disease in a Family Setting

November is Alzheimer’s Awareness Month, a time to raise awareness about this progressive memory disease and show support for the six million Americans who live with it. Many of our hospice care patients have Alzheimer’s in San Francisco and elsewhere, and we see the devastating effects it has not only on the individual but the family members as well.

These are the forgotten ones, the ones who are in the background providing care every single day to ensure their loved one is healthy, safe, and well cared for. According to Help Guide, more than 16 million people in this country care for someone suffering from dementia. With no cure in sight for Alzheimer’s, the family’s support contributes significantly to the individual’s overall quality of life. Because Alzheimer’s is a progressive disease, families can live for years with a loved one who is slowly progressing through the stages. This can have stressful and significant effects on the family unit.

Let’s take a look at how we can better understand this disease as it plays out in the family setting.

The Family Dynamic: Changing Roles

While Alzheimer’s disease doesn’t change the person’s need for affection and love, it does change many aspects of the relationships within the household. Each family member will have a different experience, whether you’re the spouse, child, sibling, or other relative who lives in close contact. It can be devastating to lose the companionship of someone you have always been close to, even though you still spend a lot of time together. For spouses, for example, Alzheimer’s disease may affect your sexual relationship with your partner, as it often changes a person’s interest in sex, either by decreasing it or increasing it, says the Alzheimer Society. As you can imagine, this can create problems within a marital union.

Adult children of those with Alzheimer’s may find themselves taking on an opposite role than they have played throughout their lives. Instead of the parent taking care of them, the roles are reversed and now the child becomes the caregiver. Especially when one parent has already passed, leaving the other parent with Alzheimer’s alone, the tasks of managing the household’s finances, doctor’s appointments, and general upkeep and maintenance for the property often fall automatically to the adult children.

When it comes to friends of the individual with dementia, these relationships change as well. Where once your loved one used to have a lot of friends with whom they could go out to eat or vacation with, those opportunities may be slowly slipping away. Sometimes friends — even those who used to be very close — don’t know how to react to the changing health situation and feel uncomfortable. Perhaps they don’t know what to expect when interacting with them or feel responsible should something happen under their care.

Maybe they worry about the person’s behavior or don’t really know what to say. Conversations may be stilted as the priorities change and memory declines. All of these things can unwittingly push friends away. It’s often not done with malice in mind; it’s just a common human reaction. This reduction in contact with friends places an increased burden on spouses and adult children to spend more and more time with the individual, which can lead to caregiver burnout.

The caregiving burden often brings with it physical effects, which can increase the risk of health issues such as headaches, low energy, and weight gain or loss. Emotional effects may include a higher risk of depression and anxiety.

Tips: Coping Skills

Despite burnout and changing dynamics, it’s still important to provide the best care possible for Alzheimer’s patients. Here are some tips to cope better:

  1. Explore Community Resources

Even with so many resources in the community that family members can reach out for, they can be hard to find if you don’t know where to look. Ask your loved one’s doctors, hire in-home caregivers who have experience in memory care, enroll them in an adult day program, or schedule hot meal delivery services and at-home grocery deliveries, suggests the Alzheimer’s Association.

  1. Practice Self Care

Don’t ignore yourself as the caregiver. You’re no good to anyone if you’re burned out. Attend support groups, get therapy, eat well, exercise, see your own friends and spend time with your own family, and engage in stress-relieving activities such as meditation, yoga, breathing exercises, progressive muscle relaxation, and visualization.

  1. Educate Yourself

If you’re not a professional caregiver, nurse, or social worker, it can be scary to suddenly be thrown into the role you’re playing. Brush up on medical terminology, go online to research the stages of Alzheimer’s, and become familiar with the standards of care. This will take some of the unknowns away, which is often what contributes to that terrifying feeling that you don’t know what you’re doing. Chat with your loved one’s in-home caregivers, ask them for tips, watch how they interact with your family member, and look for community programs that can educate you and other members of the family on Alzheimer’s disease.

Contact Pathways Home Health and Hospice

We care for many patients in our hospice program who suffer from Alzheimer’s disease. We see firsthand the effect caregiving has on the family members, which is why we want to help support you too. To learn how contact us at 888-978-1306.