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Involving Family & Friends with Dementia Caregiving

Did you know?

When relatives and friends live far away from their loved ones with Alzheimer's Disease or dementia, they may feel as if they can not assist in caregiving. The National Institute of Aging has developed a guide to long-distance caregiving which can help these individuals really provide help and support even from a distance:

When a partner, parent, or another loved one is diagnosed with dementia, friends and family members may not understand what is happening to the person they knew or how this might change their relationship. It can be frustrating to have to constantly explain the “situation” to others in your family. However, by educating your friends and family about what to expect from your loved one and what you both need in terms of care and support, you are better equipping them to participate in care.

When you need help and support, approach friends and family members with specific tasks or times in mind that they can help with. For instance, if you have a sibling who lives nearby and you know that your loved one needs to go to the doctor on Friday, ask him or her if s/he could possibly take your loved one to the appointment, so you can runs other errands or have a break. Also, if family members are visiting from far away, you might consider asking them to spend a day or two with your loved one so that you can get away, while they spend quality time together. Often all you need do is ask a friend, neighbor, or family member and you will be surprised how many are willing to help. Just as you are supporting your loved one, allow yourself to be supported by your loved ones and those around you as well. However, even if you do not feel you have a network of friends and family that can support you in caring for your loved one, there are a variety of respite and community care options that are available to aid you in your caregiving.

Special Events and Holidays

Special occasions can be awkward times for individuals with dementia. Visiting family and strangers, new smells and sights, and lots of people and activity can make such events confusing and frustrating for them, leading to emotional outbursts. Additionally, visitors may be surprised and disappointed at what they perceive as the changes in their loved one and in traditions. It is still possible to have gatherings and special events, but there are some things you can do beforehand to ensure that they run as smoothly as possible:

  • Prepare visitors beforehand for what to expect from your loved one.
  • Consider smaller, more intimate, simplified gatherings.
  • Keep familiar traditions or settings.
  • Allow your loved one to contribute to the event, within their abilities.

Resources

So Far Away: Twenty Questions for Long-Distance Caregivers

Source: National Institute on Aging (NIA)
Description: This color booklet offers suggestions for long-distance caregivers on how they can be actively involved in the care and treatment for loved ones.

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Alzheimer's Family Support & Education

Source: Fisher Center for Alzheimer's Research Foundation
Description: This web page discusses the roles that family can play in providing care for a loved one with Alzheimer's disease. It also provides resources and education programs to prepare everyone for the task.

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How Does Alzheimer's Disease Impact Children and Teens

Source: Alzheimer's Association
Description: This pdf of a color brochure, written in simple and uncomplicated speech can explain some of the questions children and teens may have when a loved one has Alzheimer's disease or dementia.

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What is Happening to Grandpa? A Family Takes Care of a Loved One with Alzheimer's

Source: Alzheimer's Association
Description: This easy-to-read, color brochure is presented like a comic book and can be good educational material for families to express to children how a loved one with Alzheimer's is affected and what kind of support and care may be needed.

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How to Tell Your Kids About Your Parent's Alzheimer's Disease

Source: Caring.com
Description: This web page describes what children need to understand about Alzheimer's and how it affects children when a close person develops it.

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