Dementia affects one in eight Americans older than 65. It cannot be prevented, there is no cure, and drug effectiveness is limited. Yet people with dementia can continue to live fulfilling lives despite decreased physical and mental functions. Thanks to a new approach known as person-centered or holistic dementia care, patients and families don’t need to feel helpless when facing the ravages of the condition.
A person-centric plan emphasizes well-being and quality of life rather than the behavior management and prescribed routines of the past.
Memory-impaired individuals are especially prone to self-deprecation, so it is important to focus on the positives. Dementia patients can still command many of their faculties—physical and mental—well into the disease’s onset. However, it is easy for a conventional care program to concentrate on what a patient can’t do rather than on what they can. This is one area where a person-centric plan can make a huge difference. The approach hones in on an individual’s continuing abilities with activities that reinforce cognitive learning, promoting positive feelings and maximizing the independence of a person with dementia.
This model is more than just theory—it’s a practical approach. The implementation begins with a holistic assessment of an individual and then builds a customized care plan. To understand a patient, care providers not only examine medical records and health conditions, but also the individual’s social history. Information about a person’s preferences and interests can be gathered from the patient, their family and friends.
Such comprehensive patient assessments should become the new norm for both home care providers and long-term care facilities specializing in dementia treatment. For example, Homewatch CareGivers aides use a social history form to evaluate the needs and interests of a person with dementia, and then promote clients’ choices and encourage meaningful activities based on this information. In a facility setting, staff would create—and regularly update—a profile card logging a patient’s preferences, interests and behavior. As a person-focused tool, this profile card allows staff to view treatment through the eyes of the patient and deliver truly personalized care.
Knowing a person’s family situation, such as marital status, names of children, as well as level of education and personality traits (for example, whether they are talkative or shy, reserved or curious) can help a care provider have meaningful interactions with their patient. Many older adults welcome conversations about their grandchildren, their hobbies or any other topic that makes them feel comfortable.
Reinforcing ties to the community can help, too. Keeping a patient involved with their religious groups, local organizations or clubs forms a structure in their lives, which can be vital to their sense of belonging and inclusion.
Wilburn* was diagnosed with Alzheimer’s disease, grew emotionally distant and rarely interacted with his wife. But having a professional caregiver who was able to engage him in activities he enjoyed and encourage social interactions with family members, his colleagues and golf club friends reduced his feelings of confusion and fostered a sense of belonging. The result: Wilburn now hugs and kisses his wife and is able to say “I love you.”
People living with dementia often struggle with self-awareness. Encouraging them to continue with life-roles and hobbies boosts their confidence and ensures a feeling of accomplishment and purpose. Care providers who are familiar with their patient’s hobbies, interests and preferred activities can create a tailored daily routine.
Take for example Molly. As her dementia worsened, she began exhibiting signs of depression and agitation. A Homewatch CareGivers aide working with Molly learned from her family that Molly had once been an avid gardener, so the caregiver provided her with plastic pots, gloves, soil and seedlings. She even helped Molly start an herb garden on a windowsill. Able to continue with her favorite hobby, Molly’s mood improved and she is now able to sleep all night. Such meaningful activities and interactions are essential to human health and psychosocial well-being, as they ward off emotions like helplessness, boredom and loneliness.
Dementia can often cause a feeling of being lost. A person living with dementia can have difficulty understanding what is going on around them, leading to confusion and stress. They feel powerless as they start to lose the identity of the person they used to be. Meaningful activities and interactions connect the past with the present, giving a person with dementia an anchor.
A professionally trained caregiver knows how to encourage independence, engaging a person with dementia one step at a time, without giving them too much information at once. In a failure-free environment the person with dementia is never “wrong”: if they have a tough time with one step, a caregiver can assist. If a patient doesn’t remember how much sugar to measure out, a caregiver can say, “You can pour, and I’ll measure.”
Also, many people with dementia want to participate in their own care. When brushing her teeth became a tough task for Serena, our professional caregiver would prepare a toothbrush with toothpaste and use a mirroring technique to help Serena brush her teeth. This type of environment empowers a person to regain their sense of security about their place in the world.
Person-centered dementia care does not just help the patient—it helps their family. When a son sees his mother enjoying the activities she used to take pleasure in, it brings families closer together by relieving stress and keeping frustrations at bay. Caregivers trained in person-centered dementia care become care partners to the families affected by dementia by providing support and education. For example, our Guide to Living with Dementia proved to be a valuable introduction to dementia care for many family caregivers.
Person-centered dementia care should be the norm for healthcare professionals and families of those living with dementia. They say there is no point in having a life if you can’t live it. By treating people with dementia the way they deserve to be treated, it’s possible to create an environment in which an individual flourishes and enjoys every day of their life.
*The names of those with dementia in this story have been changed to protect their privacy.
Jennifer Tucker, vice president of Homewatch CareGivers, a national homecare company that uses the Pathways to Memory™ program, has worked in case management, corporate wellness, women’s health, and health education. Tucker holds a master’s of health sciences from the Johns Hopkins School of Public Health in Baltimore, Md. Follow @hwcaregivers on twitter.
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