Oct 23, 2011

A Diagnosis of Alzheimer’s – Now What?

In the case of managing Alzheimer’s and other forms of dementia, it truly does “take a village”.

By Monica Heltemes

There are many valuable resources available when a diagnosis of Alzheimer’s hits a family.

The Alzheimer’s Reading Room is definitely a great one to know about, but it may take awhile before persons diagnosed and families find this and other resources. Why is that?

After a diagnosis of Alzheimer’s, or other related form of dementia, the person and family members and friends are likely in shock and feeling overwhelmed. They may not have the mental energy to pursue looking into resources. There may also be denial.

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This may be a normal part of the disease for the person with dementia, but denial can also occur with the surrounding family and friends who may not fully recognize the memory and thinking difficulties that are present. When denial is present, resources are likely not pursued.

Why is knowledge of resources so important?

The course of this disease can be very long, over many years. The care giving tasks required become more consuming as the person with Alzheimer’s declines.

And it is a different type of care that is often needed. It is not like helping a person with a physical problem. For instance, helping a person with a broken arm to put on their shirt or helping to walk with the person with a weak leg.

Instead, helping the person with Alzheimer’s, may consist of repeating directions the person has forgotten, reminding the person to brush his teeth, reassuring the person when she is worried, and re-directing the person when he is looking to “go home”. These are care techniques that are not intuitive.

Caregivers may not know how to use approaches such as these, or even that there may be dementia-specific techniques that can help.

Last, Alzheimer’s and other dementias do not display and progress the same from person to person.

The saying goes "When you have met one person with Alzheimer's disease, you've met one person with Alzheimer's disease." So that makes it difficult to give one particular formula or recommendation for care management. It will be individual to that person, that family, and that environment to know what may work or not work. All of these reasons outline why the knowledge of resources is so important with Alzheimer’s disease and other forms of dementia.

According to the Fisher Center for Alzheimer’s Research Foundation, “Support and education for caregivers and family members is … crucial to the best care of people with Alzheimer's.” This is not only to benefit the person with dementia, but also to protect the well-being of the caregiver.

Caregivers can experience physical and emotional tolls on their health. The caregiver may not even realize it, as the care giving tasks become more consuming. Knowledge and use of resources can help provide outlets to release stress, to find comfort in others’ support, and to help recognize stress levels and keep it in check.

If the stress becomes too great, knowledge of resources can help find services or care homes to help.

The types of resources available are many including: in-person support groups and presentations; internet websites, chat rooms, blogs, Facebook groups; books and other print articles; and community and church programs. Different supports may be appropriate at different times. In the case of managing Alzheimer’s and other forms of dementia, it truly does “take a village”.

Alzheimer’s Association

Alzheimer’s Foundation of America

Local Area on Agency

Monica Heltemes is a practicing occupational therapist and owner of MindStart™. MindStart designs hobby-style items, such as games and puzzles, specifically for persons with memory loss. They keep persons with dementia active, while giving support to caregivers, and are quick and easy to use. Visit MindStart (Activities for Persons with Memory Loss) to learn more.

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Original content the Alzheimer's Reading Room