The Benjamin Rose Institute on Aging has launched a new program that allows early-stage dementia patients to participate in their own care planning, potentially easing the burden for both the person with dementia and their concerned family members.
Known as SHARE, the program outlines a care plan for loved ones to follow as the condition progresses. Based on two decades of research by Benjamin Rose, the SHARE toolkit includes an iPad app which lists tasks in a set of color-coded circular diagrams. Under the guidance of SHARE counselors, duties can then be assigned to caregivers, whether they're family, friends or professional service providers.
"It's a pictorial expression of the communication," says Benjamin Rose president and CEO Richard Browdie. "The app captures the evolution of the conversation so you're not going to back to zero the next time you meet."
Browdie says SHARE enables early-stage dementia patients to contribute in planning of daily activities such as finance management, food shopping and preparation, and personal hygiene. Planning these tasks is also a stress reliever for people who feel overwhelmed by a family member's diagnosis of Alzheimer's disease of other form of dementia.
"It builds confidence that they're doing the right thing, because they're doing all they can," says Browdie. "That can be empowering for the caregiver when guilt or self-doubt creeps in."
Investigation conducted by the Benjamin Rose Center for Research and Education indicates that early-stage dementia patients benefit from active participation in their care plan. Ongoing communication increases knowledge about available services, and preempts difficult questions regarding care that may be embarrassing for the recipient, such as feeding themselves or using the bathroom.
SHARE - an acronym for Support, Health, Activities, Resources, and Education — is currently available to professional organizations that serve families and individuals living with dementia in its earlier stages. Utilizing this technology, proponents say, can give people diagnosed with dementia the confidence that their needs will be met down the road.
"People used to think Alzheimer's was a switch off/switch on kind of disease, but it's progress is gradual" says Browdie. "Communicating with a care recipient while dementia is advancing can alleviate some of those stresses."