How to Cope With Family With Alzheimer’s or Dementia: 14 Tips

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Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

If you are coping with a family member with Alzheimer’s or dementia, you are not alone, which may be a small consolation. Many families end up taking in a family member with Alzheimer’s disease due to financial and care concerns. The caregiving duties and burden can be immense and incredibly stressful.

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Approximately six million people in the U.S. have Alzheimer’s, according to The Alzheimer’s Association and that number is expected to reach 13 million by 2050. The financial and emotional stress on families is incalculable. The unfortunate and sad truth is that there is no cure for Alzheimer’s and very few medications that help with the behaviors that characterize the disease. 

All family members are affected by someone with Alzheimer’s, and coping with competing demands can be overwhelming but possible. A positive attitude, flexibility, education, and accessing resources are the foundation of good care for your whole family.

How Can Having a Family Member With Alzheimer’s Change Family Dynamics?

Family dynamics will inevitably change when a family member has Alzheimer’s. It doesn’t matter what your familial relationship is to the person with Alzheimer’s, as it can change in dramatic and sometimes disturbing ways.

One of the most difficult emotional consequences of Alzheimer’s is when your loved one does not recognize you any longer. Other challenging behaviors like aggression or wandering can be upsetting and stressful for the entire family. However, you and your family can cope by following our suggestions.

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How to Cope With a Family Member With Alzheimer’s 

Coping is the perfect word for how to deal with a family member with Alzheimer’s. Coping is an ongoing and ever-changing adaptation to a person with Alzheimer’s. As they change and get worse, you will need to be flexible, compassionate, and calm. Here are some suggested strategies for living and caring for a family member with Alzheimer’s. 

1. Educate yourself and your family

Your top priority should be educating yourself and your family about this disease. The more you know, the fewer surprises there will be. Some families decide to help their loved one receive an evaluation to further identify the type and stage of the illness. Having a firm diagnosis can provide some information on the expected trajectory of the disease.

Even if you decide not to go the evaluation route, try to investigate and find out as much as possible about the kinds of behaviors and care needs that can develop. Share what you learn with other family members so that you all have a foundation of understanding about what to expect.

2. Do advance care planning

If you have not completed advance care planning and end-of-life directives, we recommend doing so immediately. When a person with Alzheimer’s loses the capacity to make health care and financial decisions, someone needs authority to manage these decisions.

Getting those documents signed when someone has advanced Alzheimer’s may be tricky. In these cases, some families resort to guardianship which has its own emotional and financial costs.

3. Find resources before you need them

It can be beneficial to start collecting a list of resources before you need them. Doing so can help reduce stress and give you a measure of control. Some resources to consider can include in-home caregiving, respite care, caregiver blogs, caregiver support groups, and home accessibility additions. You may also want to consider reading some books about dementia as well.

Start with keeping a list with phone numbers of resources, and don’t forget about memory care communities. There might come a time when you need one and you may not have time to investigate properly. Consider meeting with a senior placement professional who can assist you with finding an appropriate community.

4. Take a hard look at finances

According to AARP, families spent nearly 20 percent of their personal income on out-of-pocket costs assisting a family member with Alzheimer’s.  According to WebMD, “the lifetime cost of care for a person with Alzheimer's stood at $329,360. Families bear 70 percent of that cost through out-of-pocket expenses and the value of unpaid care.”

For some families, the costs will be much higher than that depending upon their financial situation and whether they will need memory care.  Meeting with a financial or elder law estate planner can help you get a handle on expected costs.

5. Take care of yourself and your family

Taking care of someone with Alzheimer’s can leave you with little energy or time for yourself or the rest of your family. Caregiving is such a consuming endeavor that before you know it you are frazzled and exhausted.

Taking care of yourself and your family is an ongoing effort to achieve balance in your personal life. However, it is important to remember that you can do it. It just takes awareness and the belief that you deserve some care as well.

How to Interact With a Family Member With Alzheimer’s 

Interacting with a family member with Alzheimer’s can sometimes feel like a moving target. During the day, your family member may go from calm to agitated and back again.

There are good days, bad days, and everything in between. Much has been written about how to interact with a family member with Alzheimer’s and you may have to experiment with what works best.

6. Try not to disagree

Memory loss and confusion are two main characteristics of Alzheimer’s disease. Some people’s memory is so impaired they can only remember something for a minute or two before it is gone. Trying to correct someone will just likely create more confusion and agitation. If possible, try to distract the person and move on to a new topic or activity.

7. Use simple clear communication

Open-ended questions can be overwhelming for someone with Alzheimer’s disease. Yes or no questions work better. When communicating, try and speak slowly and clearly with a simple sentence structure.

It can also help eliminate other distractions that can create confusion. If it seems appropriate, use physical gestures like holding a hand to create warmth and comfort.

8. Have activities in mind

When a person with Alzheimer’s becomes agitated, you will want some activities to distract and calm. It might take some trial and error, but having a list of possibilities won’t leave you scrambling to find something. Activities to consider are music, sorting objects, simple games, and reminiscing.

9. Stay calm

Staying calm can be hard to do. Taking some deep breaths and realizing you can’t control the situation is helpful. Your agitation will only inflame the situation.

People with Alzheimer’s can be very sensitive to emotions and misunderstand their meaning and intent. Find healthy and appropriate ways to vent. Seek the advice and counsel of a therapist if you need to. 

10. Back to basics

Sometimes the basics of health get overlooked when interacting with someone with Alzheimer’s.

Movement and exercise can help elevate mood and improve physical functioning. Proper nutrition that focuses on a plant-based diet minimizing processed foods can help. And don’t forget about hydration. Older adults start to lose their thirst mechanism, which can lead to dehydration. Try to make fluids available throughout the day.

How to Avoid Family Conflict When a Loved One Has Alzheimer’s

Stress leads to family conflict, and taking care of someone with Alzheimer’s can be very stressful. Some family conflict is unavoidable. Family members may have different views on interacting or taking care of a person with Alzheimer’s. Perhaps, kids, spouses, or partners feel left out and neglected. 

11. Encourage open communication

Not expressing feelings can lead to resentment and anger on all sides. The best way to counteract that is to encourage open and honest communication. Schedule regular family meetings to talk about issues or problems.

Acknowledge other family members’ pain, grief, and discomfort with someone who has Alzheimer’s. Support groups and online forums can be a great place for people to meet others who are experiencing similar feelings.

12. Involve other family members

When other people are included in decisions and care, they feel appreciated. Talk as a family about concerns and get ideas from everyone about managing your loved one with Alzheimer’s. Sometimes more heads are better than one. 

Help define family member tasks and responsibilities so that everyone knows what they are responsible for and people don’t blame one another for care needs that go unmet. In the end, though, the primary caregiver needs to make decisions after taking everyone’s opinions under consideration.

13. Use humor

Without laughing at someone, humor can help defuse stressful situations. It is possible to find humor in caregiving and family dynamics. When people laugh, it improves their mood and can sometimes be a catalyst for better communication.

14. Seek outside help

If family conflict reaches a point where it becomes unmanageable, seek outside help. Outside assistance could be a mediator or a counselor who can help families reach consensus and cooperation.

Sometimes family members are dealing with their own fears about Alzheimer’s or mortality. Everyone probably wants the same thing: care and compassion for one another and the loved one who has Alzheimer’s.

How to Cope With Family With Alzheimer’s or Dementia

Coping with a family member with Alzheimer’s or dementia won’t be easy. Take care of yourself and your family as you navigate this challenging journey.

Learn as much as you can, and adhere to core values of care and compassion. Accept that you can only do what you can do, and much will be out of your control.


Sources:
  1. “Facts and Figures.” The Alzheimer’s Association. alz.org/alzheimers-dementia/facts-figures
  2. “Surprising Out-of-Pocket Costs for Caregivers.” AARP. aarp.org/caregiving/financial-legal/info-2019/out-of-pocket-costs.html
  3. Preidt, Robert. “The High Costs of Alzheimer’s.” WebMD. 20 March 2018. webmd.com/alzheimers/news/20180320/the-high-costs-of-alzheimers 

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