Alzheimer's Care: A Guide for Family Caregivers

Excerpted from
A Dignified Life; The Best Friends Approach to Alzheimer's Care: A Guide for Family Caregivers
By Virginia Bell, MSW, David Troxel, MPH

Memory Making

Medical science has developed prostheses for people who have lost limbs, techniques to bring back eyesight for people with cataracts, and devices to improve hearing. Although there is no cure yet for people with Alzheimer's disease, we do have a method of bringing back memories-a "human" prosthesis-a Best Friend. Best Friends are the memory, the biographers for people with dementia.

One of the most important things a Best Friend can do is individualize care. In home settings where family members provide the majority of the care, caregiving is naturally individualized. It becomes much more challenging when family members or individuals are cared for by staff in long-term care programs who may or may not know them well. However, in any setting, a written, videotaped, or scrapbook Life Story helps create a special, caring, one-to-one relationship between the person with dementia and his or her caregiver. Life Stories can guide caregivers in designing activities that the person will enjoy and helps caregivers understand potential triggers for sadness, agitation, or concern. A good Life Story can also help enhance recognition in the person and decrease fear.

The Life Story is also a way of recording one's life achievements. When families come together to create the document, the Life Story can be a healing tool, a life-affirming project that can increase acceptance and bring family members closer together. It's a celebration of someone's life and can be tucked away for generations to come.

The idea of writing down this story might seem overwhelming, but it's not. This chapter will provide you with an outline of what to include, and you probably already know much of the specific information you need to create an effective Life Story. This chapter also shows you how to create a practical "bullet card," a simple Life Story card to use in everyday care.

Think of yourself as a detective. Collecting and recording information to write a good Life Story can involve solving family mysteries, interviewing distant relatives and friends, reviewing old photographs and clippings, and asking the person for information, if possible.

It is important to begin documenting the Life Story early. This way, the person with dementia can still contribute many of his or her own stories. If too much time has already passed, much information can still be collected from friends and other family members. A good starting point is to think about generational memories or historic or significant cultural events your family member experienced (e.g., World War II, Frank Sinatra, The Ed Sullivan Show). Do your best. With some attention to this project, you will be amazed at how personal history comes to life.

The Life Story can be woven into all aspects of Alzheimer's care. For a template of how this can be done, see the Life Story of Rebecca Matheny Riley. Within it, we've included notations on the ways it can be used to provide outstanding care and meaningful activities for people with dementia.

Ingredients of the Life Story

If you are creating a comprehensive Life Story for your mother, you need to remember that the audience for the Life Story is larger than just family members. If your mother ever needs in-home help or has to move to a residential care facility, this story must paint a picture for staff members who will initially not know your mother well. Be sure to include the following ingredients.

Childhood

In Alzheimer's care, understanding the person's earliest years is sometimes more important than familiarity with the later years. Many people with dementia recall their childhoods for far longer than their more recent lives, so we want to know as much as possible about this influential time.

Record the date and place of birth (or adoption), but do more than simply write down the basics. Get a feel for the atmosphere in which your mother was raised. Was her birthplace rural or urban? Was she raised in a coal camp in Appalachia or in a Park Avenue penthouse? Did she raise chickens or buy them? What were the main industries of the town in which she was raised? Did her hometown have any special claim to fame? She might remember her birthplace as the place where the first Model A Ford came off the assembly line, where Corningware was invented, or where everyone admired the Eiffel Tower.

Try to piece together even a simple family tree of your mother's childhood. Include the names of her grandparents, parents, and siblings. Ask whether there were any particularly influential relatives, such as an adored older sister or a grandmother who baked prizewinning apple pies.

Talk about school. Does your mother remember her first day of school? This is usually a milestone. Was it a one-room schoolhouse or a large school? Was school enjoyable? Was she a good student? Was there a favorite subject or favorite teacher? We remember one woman who took pride in remembering that she was "Miss Seventh-Grade Square Root!"

Discover if her parents had an unusual (at least as compared to present-day] occupation. Did they deliver milk or pilot the local riverboat? Many older people today emigrated or were children of immigrants, and if you don't already know it, it is often meaningful to find out more about a family's early journeys. Sometimes these stories involve high drama-life-threatening escapes from an oppressive country, a difficult voyage on an unsafe boat, or travel to the Oklahoma Territory in a covered wagon.

Ask about happy and sad events. In finding out about any life-defining childhood events, it is important to find happy childhood experiences, but it's also essential to understand any traumas in order to avoid triggering unhappy memories. Perhaps a defining moment was winning a student-of-the year award or a statewide fishing contest. It can be valuable to know whether your mother had a troubled childhood (e.g., being orphaned at an early age, surviving a wartime childhood or a natural disaster, such as a flood or fire).

Get a feel for major geographical moves undertaken in childhood. If your mother was a "military brat," for example, and lived in many towns and cities, this can spark interest.

Record family names. These often offer opportunities for your mother to comment.