Actress Olympia Dukakis has spoken of the difficulties she encountered when making decisions about care for her mother, who was diagnosed with dementia: “Too often people face decisions about caring for a loved one while coping with the emotional stress of an illness or change in living situation. To make knowledgeable choices, caregivers need information before a crisis hits.”

This basic guide is one way that we help caregivers make decisions before a crisis occurs. Use this resource to become familiar with the various services that are available to you. We strongly encourage you to contact Rogerson House for additional support. Visit all facilities that seem to meet your needs. Ask questions. And remember, help is available. You are not alone!

Obtaining a Thorough Diagnosis
Alzheimer’s disease is a neurological disorder that affects the brain cells that are necessary for thinking, learning, memory, judgment, language, vision and motor coordination. Brain cells are affected in several ways. Neural plaques form, and a substance within these plaques attacks the weakened cells, causing them to die. In addition, some of the chemicals that allow brain cells to communicate with one another are diminished. "Dementia" is a broader term which is defined as the loss of intellectual functioning to the extent that it interferes with a person’s daily activities. Dementia itself is not a disease. Rather, it is a set of symptoms that accompany a disease or condition. There are over 80 different types of dementia.

Some of the common symptoms that may accompany dementia include: memory loss, confusion, impaired judgment, diminished physical coordination, personality changes, agitation and paranoia. Obtaining a thorough diagnostic evaluation when these symptoms begin to appear is very important. It can rule out treatable causes as well as provide immediate support to the patient and family. A thorough evaluation includes a physical exam, brain scans, lab work, a psychiatric and neurological evaluation and a complete review of the patient’s medical history. Once you have a diagnosis, you will be better equipped to assess which care options are best for your loved one and your family.

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Staying At Home
Many people in the early stages of memory loss live at home under a family member’s care. Education and support groups can help make life more manageable and provide emotional support for the caregiver. You may need to make some modifications to the home for safety reasons.

A Few Suggestions

• Reduce excess clutter.
• Keep walkways clear.
• Remove loose rugs.
• Keep the environment well lit.
• Place gates at the top and bottom of stairs.
• Install grab bars and a shower chair in the bathroom.
• Lower water temperature to prevent burns.
• Install locks higher or lower than is customary.
• Keep medications and toxic supplies locked or out of reach.
• Register with the Alzheimer’s Association’s “Safe Return” program.

Help for the Caregiver at Home
There are several options for professional in-home help that can provide a break for the caregiver. A certified nursing assistant can provide assistance with activities of daily living such as bathing, dressing, grooming, and toileting. A home health aide can help with homemaking services such as food preparation, laundry and housekeeping. An additional option is to hire a companion to provide social support. Visits by nurses and therapists may also be appropriate.

These services are available through visiting nurse associations, home health care agencies, hospitals and senior service agencies. There are often a minimum number of hours required and prices vary based on service, time of day, hours and agency. Your loved one’s physician can offer referrals.

In-Home Care Checklist

• What services are available and how often will they be provided?
• What type of training is given to the staff and is it dementia-specific?
• Is a manager on call 24 hours per day?
• Are caregivers on a consistent schedule?
• What forms of payment or insurance are accepted?

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When It's Time For a Change
Making the decision to transition your loved one from their home environment can be very difficult. Such a change, however, is often the most positive choice for your loved one. Therapeutic activities provided in a professionally-administered program are simply not available in the home environment and can improve quality of life. Further, respite from stress for the caregiver plays a significant role in a family’s ability to care for itself.

If you answer yes to most of these questions, it may be time to consider a transition out of the home:

• Does your loved one need daily assistance?
• Is it necessary to closely monitor medications?
• Is safety in the home a concern?
• Are your loved one’s social contacts limited?
• Has your loved one wandered or become lost?
• Are behavioral challenges causing difficulties for other family members?
• Are you concerned about your own emotional and physical health?

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Day Programs
A good day program is designed to help participants with memory problems maintain physical and mental abilities, thus delaying the need for residential placement. A qualified day program will also oversee health care needs, and can provide such services as medication monitoring, diabetes care, dietary supervision, and monitoring of vital signs. Many programs will offer a free “guest day” for your loved one to visit the program and try the activities.

Day Program Checklist

• Does the focus and philosophy of the program suit your loved one’s needs?
• Is the program dementia-specific or is it mixed?
• Are the participants engaged in creative and stimulating activities?
• Are appropriate activities planned for participants with differing levels of functioning?
• Is there a physical fitness program?
• Are there trips into the community?
• What type of training is given to the staff and is it dementia-specific?
• What is the ratio of staff to participants?
• What are the hours of the program and are extended hours available?
• Is the environment secure and is there accessible and secure outdoor space?
• Is transportation provided and at what cost?
• What forms of payment or insurance are accepted?

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Assisted Living
Assisted living for people with dementia may be the best choice during the early and middle stages of the disease. A good program will provide assistance with activities of daily living, a specialized recreation program, and a safe, structured environment that provides ongoing stimulation and support.

There are two types of programs to consider. One type is a traditional assisted living community with a small unit dedicated to dementia care. The other is a free-standing program which caters exclusively to people with dementia. It is good to visit both types of programs when you are evaluating the needs of your loved one. Some facilities offer short-term respite stays that provide opportunities to test the program.

Assisted Living Checklist

• Is the therapeutic activity program diverse and is there more than one program occurring at the same time?
• Is there a physical fitness program?
• What type of training is given to the staff and is it dementia-specific?
• What are the staffing ratios on each shift?
• What types of consultants are available to residents?
• Is the interior designed to support a person with dementia?
• Is the environment secure and is there accessible and secure outdoor space?
• How are medications managed?
• How many residents are in each room?
• What is the level to which the residence can handle a resident’s care?
• What type of access to information is the family provided?
• How frequently are care planning meetings held with the family?
• What type of support is given to families?
• Does the staff help families find nursing home placement when a transfer is necessary?
• What is included in the monthly fee and what services incur additional fees?
• What forms of payment or insurance are accepted?

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Nursing Homes
In the later stages of dementia, a nursing home may be the most appropriate environment for your loved one. Planning for this level of care in advance of a crisis will allow you to make decisions with less pressure. You will probably want to visit at least three nursing homes so you can make informed comparisons. Some nursing homes are dementia-specific and some have residents with a variety of skilled nursing needs. As you are narrowing down your options, try to find one that is close to friends and family. Both will be wonderful advocates as your loved one becomes less able to communicate, and will offer familiar connections as the disease progresses.

Nursing Home Checklist

• What recreation programs are provided and are there activities scheduled throughout the day?
• Is there a physical fitness program?
• What type of training is given to the staff and is it dementia-specific?
• What are the staffing ratios on each shift?
• What types of consultants are available to residents?
• Is the interior designed to support a person with dementia?
• Is the environment secure and is there accessible and secure outdoor space?
• How are medications managed?
• How many residents are in each room?
• Is there privacy for personal care, phone calls and visits?
• How well did the community do on their last state inspection?
• What type of access to information is the family provided?
• How frequently are care planning meetings held with the family?
• What type of support is given to families?
• What is included in the monthly fee and what services incur additional fees?
• What forms of payment or insurance are accepted?