Katharine Gammon

October 28, 2013

Patients with mild to moderate Alzheimer's disease (AD) maintain their interests and values and are able to express feelings about what makes them happy, new research shows.

"Dementia is an epidemic ― there will be an estimated 60 million people living with dementia by the year 2030," study author Lynn Shell, PhD, APN BC, clinical assistant professor at Rutgers University in Newark, New Jersey, told Medscape Medical News.

"Unfortunately, dementia is stigmatized, and it made me think back to the days when cancer was so similarly shunned. I felt that studying positive emotions could help change the way dementia is viewed," she added.

Dr. Shell conducted a qualitative study to understand the subjective feelings of happiness from the perspective of individuals with AD. She used a technique known as photo elicitation, providing cameras to 12 people with mild to moderate AD who were at least 70 years old and who did not live in assisted living conditions or a nursing home. Study participants were instructed to take pictures, and then Dr. Shell interviewed them about the photographs.

She found that all 12 participants were able to take pictures and to talk about their feelings.

"People with dementia are still capable of discourse about their own experience, they want to have deeper-level conversations," says Dr. Shell.

Dr. Shell found that study participants retained the values they had when they were younger. These included connection to family, friends, pets, and the like; love of nature; transcendence (spirituality, being part of something greater than themselves), and independence.

The results, she said, suggest that patients with mild to moderate AD can experience happiness and reflect on life.

"Values are retained and deeply personal throughout our lives ― cognition isn't what's important. Living in concordance with values is important to happiness."

Dr. Shell warned that to improve quality of life for those living with dementia, caregivers must take time to hear their narrative and deconstruct their experiences in order to understand them.

Feeling Valued

Commenting on the study for Medscape Medical News, Rebecca Logscon, PhD, research professor at the University of Washington in Seattle, who was not involved in the research, said that as with other chronic illnesses, AD presents a unique set of challenges for patients and their families.

"Through those challenges, lifelong values, interests, and preferences are important ― some remain stable, and some change with the onset and progression of cognitive decline," she said.

Good communication, support, and maintenance of valued activities are important to quality of life, said Dr. Logscon.

"It can be hard to acknowledge the need for help from family and friends, so tact and understanding are important. We also need to remember that relationships involve give-and-take, and recognize the gifts that the person with AD has to give, as we step into the role of caregiver. Being appreciated and valued goes a long way toward maintaining a good quality of life."

Dr. Shell and Dr. Logscon report no relevant financial relationships.

American Psychiatric Nurses Association (APNA) 2013 Annual Conference: Session 2036. Presented October 10, 2013.

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