Alzheimer's Disease: Resources for Managing Family Stress

It is not at all unusual for families to find themselves feuding when confronted with all the decisions of caring for an elder with Alzheimer's, or other long-term diseases of aging. Caregiver stress can run high and emotions can become frayed, but professional and objective guidance and resources are available for those who seek it. The resources mentioned in this article are good starting points for families who find themselves in this position.

Their widowed mother was now in her eighties and living alone. She had outlived most of her friends. Memory issues were apparent. Home safety, driving, medication adherence, good nutrition, and socialization were concerns. Her nearest child was 20 miles away, and while very busy during the week with a growing family and work, he did visit on most weekends. The other children stayed in close phone contact, and visited at least once a year, but all lived out of state. Everyone agreed they needed to do “something.”  

Mom’s dementia was progressing. Was it Alzheimer’s or another type of dementia? To this point, she had only been followed by a primary care physician for her medical care. 

She had some help at home, but it was not enough, and the children were concerned about the cost of more caregiver hours. Whether to remain in her home or to move to a local retirement facility was one of the many questions. The children felt stuck in their indecision, and sometimes, in moments of frustration and helplessness, they lashed out at one another. Over time, the stress of worry and decision-making was fraying their family bonds.

When the issues are numerous, and the questions are overwhelming, there are options a family can consider to bring resolution to the problems, as well as to bring sanity and goodwill back to their family. The first question to ask is “What is best for the person experiencing symptoms of dementia?” 

A Good First Step: The Neuropsychological Evaluation

If there has been no neurological evaluation yet, get one. A thorough neuropsychological evaluation will establish a baseline so that cognitive changes over time can be monitored to provide better treatment. With this info, a family can better understand their loved ones needs, and the information can provide the clarity needed to make medical and caregiving decisions. A loved one’s primary care physician can make the referral for the evaluation.

In the above example, dementia was clearly present, though before the evaluation, the kind of dementia was unknown. When it became clear in the evaluation that it was probable Alzheimer’s, her long-term needs came into focus.

Someone to Guide and Advocate

A family facing these caregiving issues for the very first time can struggle with identifying resources for their loved one. Increasingly, options for assistance are readily available. Two options are an Aging Life Care Specialist and/or the local Area Agency on Aging.

Aging Life Care Specialist/Geriatric Care Manager

An Aging Life Care Specialist (formerly know as a Geriatric Care Manager) is a human services professional, such as a nurse or social worker, who specializes in serving adults 65 and older, or an adult with a disability. An Aging Life Care Specialist often steps in when a family is in crisis, and helps the family find solutions to their caregiving problems, including in-home care, long term placement, and community resources. These professionals are hired privately by the family, and work on behalf of the elder. Aging Life Care Specialists can be a resource when there are differences of opinion, when the children are out of the area and cannot oversee the care, or when a nearby family needs someone to oversee and manage the care while they are working. To find an Aging Life Care Specialist in your area, go to www.aginglifecare.org.

Area Agency on Aging

While Aging Life Care Specialists are hired privately, the local Area Agency on Aging is also a valuable community resource. The Area Agency on Aging can conduct in-home assessments, and identify and access local resources for which the elder may qualify. They are a public resource, and when an elder is qualified, the cost may be shared or covered by the locale in which the elder lives. To find your local Area Agency on Aging, go to http://www.n4a.org/.

About Those Family Feuds

It is not at all unusual for families to find themselves feuding when confronted with all the decisions of caring for an elder with Alzheimer’s, or other long-term diseases of aging. Caregiver stress can run high and emotions can become frayed, but professional and objective guidance and resources are available for those who seek it. The above resources are good starting points for families who find themselves in this position.