Individual approach required for effective dementia care

Gather personal information that goes beyond OASIS

[Editor's note: This is the first of a two-part article that discusses best practices for the care of patients with dementia. This month we look at an overview of the challenges presented by dementia patients and techniques that improve care. Next month, we will look at additional tips to increase patient compliance and ways for home health workers to handle the stress of dementia care.]

About 70% of people with dementia or Alzheimer's live at home.1 This is significant for home health managers, because it means that many elderly patients for whom they provide care may have dementia, in addition to the diagnosis for which home health is ordered.

Recently released home care practice recommendations for the care of dementia patients by the Alzheimer's Association in Chicago combine reviews of literature, as well as input from a variety of associations. "The home care practice recommendations are the fourth in a series of best practice publications the association has produced to support quality care in different settings," says Elizabeth Gould, MSW, director of quality care programs at the Alzheimer's Association. Other publications discussed care in nursing homes and assisted living facilities.

"We know that many patients for whom home health is provided have dementia, even if we don't have specific data," says Mary St. Pierre, MGA, BSN, RN, vice president, regulatory affairs for the National Association Home Care and Hospice in Washington, DC. "It is important that home care clinicians understand the special needs of dementia patients, even if dementia is not the primary diagnosis."

"Making sure that clinicians understand dementia is important for several reasons," says Peter Notarstefano, director of home and community-based services for the American Association of Homes and Services for the Aging in Washington, DC. "Although home health reimbursement is related to the post-acute care service, staff members spend time dealing with the behavior that is related to dementia," he explains. Not only can dementia affect compliance with treatment protocols, but it can also affect how easily clinicians and aides can provide services, he says.

"Each patient is different, so it is important to learn as much about the patient in the initial assessment as possible," says Notarstefano. "For example, find out if the patient experiences sundown syndrome, so you know to avoid late afternoon or early evening visits," he suggests. Also, be sure to include the primary caregiver in the assessment process, he says.

"The educational process for a dementia patient is different, because you need to include the caregiver in all teaching," says Notarstefano. "The clinician should also look for ways to make the caregiver's life a little easier," he suggests. Once the patient is discharged from home health care, the caregiver will appreciate any suggestions that clinicians can make to help them better care for their family member. "Sometimes, a social work visit can be requested to help the caregiver identify community sources for respite care or other assistance," he says. Clinicians and aides also can make sure they share tips on how to improve acceptance of bathing, dressing, or other activities of daily living with the caregiver, he adds.

Use tool to gather info

In addition to the OASIS [Outcome and Assessment Information Set] information collected during the initial visit, clinicians can use a tool developed by the Alzheimer's Association to gather information about the patient's habits and behaviors that might affect care, says Gould. "The family and the patient can answer questions, and the clinician can also add personal observations that can help all team members develop a successful, individualized approach to caring for the patient," she says. Sharing information among team members is critical, because each member might observe different behaviors or different reactions to situations, she adds.

Establishing trust is key to successful interactions with a dementia patient, says Gould. "Start each visit by acting as a guest, so the patient will assume the role of host," she suggests. Be mindful of the patient's routines, so you don't interrupt their schedule and so that you visit at a time of day that is good for the patient, she says. "Also, if possible on the first visit, arrive with a friend of the patient or a family member, or even use a name of a friend to establish a bond and be less threatening," she recommends.

Don't rush through the visit, suggests Notarstefano. Take time to talk with the patient and explain what you are doing before you do it, he says. Be ready to slow down, or talk about something else to distract the patient, if he or she seems to be getting anxious, he adds.

"It is especially important to recognize each dementia patient as an individual," says St. Pierre. Don't treat a dementia patient as a child who doesn't understand what is going on; instead, take time to find out exactly how much the patient comprehends and how to best include the patient in the care, she suggests.

Including the patient can take many forms, says Notarstefano. "An aide can ask a patient to set the table while the aide prepares lunch," he says. "Easy activities that are safe for the patient to perform and give them a sense of participation will improve the relationship," he points out. Asking patients to sit in the kitchen and talk about their favorite meals or recipes while the aide prepares the meal also makes the patient feel included.

Make sure that inservices address dementia so that all clinicians and aides understand all of the symptoms and behaviors, says Notarstefano. "Many times a clinician will attribute confusion to dementia, but you can't assume that all confusion is dementia-related," he says. "Dementia progresses slowly, so if a clinician or aide notices a sharp increase in confusion or other symptoms in a short period of time, further assessment is needed," he says. Infection, certain medications, or an increase in blood sugar levels in diabetic patients can all increase confusion, he points out. "This is why it is important to get to know each dementia patient and be aware of the individual."


1. Alzheimer's Association. 2009 Alzheimer's disease facts and figures. Alzheimer's and Dementia. 2009; 5(3):234-270.


To download a free copy of "Personal Facts & Insights" to use as an information gathering tool for dementia patients, go to

To download a free copy of the Alzheimer's Association's Dementia Care Practice Recommendations for Professionals Working in A Home Setting, go to


For more information about home care for patients with dementia, contact:

• Alzheimer's Association, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601. Telephone: (800) 272-3900 (24 hours). Email: Website:

• Peter Notarstefano, Director of Home & Community-based Services, American Association of Homes and Services for the Aging, 2519 Connecticut Avenue, N.W. Washington, DC 20008-1520. Telephone: (202) 508-9406. E-mail:

• Mary St. Pierre, MGA, BSN, RN, Vice President, Regulatory Affairs for the National Association Home Care and Hospice, 228 Seventh Street, SE, Washington, DC, 20003. Telephone: (202) 547-7424. Fax: (202) 547-3540. E-mail: