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Understanding and compassion are two tenets of a program to help people with dementia and their caregivers. Janina Steinmetz/Getty Images
  • Researchers say a program in the United Kingdom is providing support for people with dementia as well as their caregivers.
  • The program, known as NIDUS-Family, sets goals and expectations in households for people with dementia.
  • Among the tenets is assessing what a person with dementia as well as their caregiver want and need.

Researchers in the United Kingdom are reimagining care for people with dementia, utilizing a framework that could expand access and improve outcomes and quality of life for individuals and caregivers alike.

The framework, known as NIDUS-Family (an acronym for “new interventions for independence in dementia”), is being investigated through ongoing randomized controlled clinical trials.

The results of one of those trials was published today in the journal The Lancet Healthy Longevity.

A pillar of the program’s approach is personalized goal setting, which affects both the caregiver and the individual with dementia.

These goals can range from deciding on an appropriate bedtimes or days that a caregiver can go out with friends.

During the trial, researchers investigated goal setting and attainment through a system known as “goal attainment scaling” (GAS).

Additionally, they also looked at serious outcomes, such as whether an individual with dementia was moved to a care facility or died during the trial.

The researchers reported that patients who received care according to the NIDUS-Family framework were more likely to meet these positive outcomes than those in a control group that didn’t receive such care.

“What we have here is a treatment that everybody living with dementia who has a family carer can access and it makes a difference,” said Dr. Claudia Cooper, a professor of psychological medicine at Queen Mary University of London and the lead author of the study.

“[With] this treatment, which can be delivered by many people, you don’t need clinical training, just some supervision can be delivered in eight hours over Zoom or even the phone,” she told Medical News Today.

Researchers recruited 302 dyads, which were pairs of individuals consisting of a caretaker and an individual with dementia, for the study.

The average age of the participants with dementia was 79 years old.

Participant dyads were randomly assigned to a control group and an experimental group. Two-thirds of the participants took part in the NIDUS-Family care framework, while the control group received routine care.

During this time, the caretakers in the NIDUS-Family care group met with a therapist 6 to 8 times over a 6-month period. After that, they worked with a therapist over the phone for the next 6 months.

The approach was designed so it could be taught to and undertaken by caretakers who did not have a clinical background.

At the end of the trial period, researchers reported that those in the NIDUS-Family cohort had statistically significantly better GAS scores, meaning that they were more likely to attain personalized goals that they had set.

Additionally, this group also had better real-world outcomes. Only about 9% of this group moved to a care home or died after one year, while in the control group the number was 13%.

“I think that the study is really exciting because it gives people the opportunity to help manage their own care, which is such an important part of things,” said Dr. Sam Fazio, PhD, the senior director of Quality Care and Psychosocial Research for the Alzheimer’s Association who wasn’t affiliated with the study.

“I see it more as part of a larger system of how we allow people to choose what they want, when they want, and how they want it, instead of dictating what people need,” he told Medical News Today.

Cooper said that healthy and successful caregiving is about more than just setting goals.

“If you are caring for someone with dementia, what we’ve shown is it makes a difference to set some smart goals about what you want from your care. But that’s not enough in itself. It’s then about getting the right help to meet those goals. And the help that you can get doesn’t need to cost the earth,” she said.

“Person-centered person-centered care is all about getting to know who that person is and then providing care based on their individual needs and who they’ve been their whole life,” said Fazio.

In the United States, the Alzheimer’s Association focuses on this idea of “person-centered” dementia care. Essential to this type of care numerous dementia care practice recommendations, including:

  • Know the person living with dementia, including their life, beliefs, likes, and dislikes.
  • Recognize their reality and see the world from their perspective.
  • Nurture authentic caring relationships.
  • Regularly evaluate care practices and make necessary changes.

Cooper said she is excited about the potential for the NIDUS-Family care framework to help expand access and improve care for caregivers and dementia patients alike.

She and her team are currently pursuing the creation of learning modules that will be accessible both online and through printed materials.

“Warm compassion and practical strategies can make a real difference. So I think this is a real tale of hope,” she said.

To learn more about the NIDUS-Family framework you can visit their website. In the United States, the Alzheimer’s Association has a 24/7 helpline that can be reached at 1-800-272-3900.