SCARBOROUGH — It’s become too common. A person with memory loss slips away from his or her daily routine and is missing. Stressed family members, working with local police, trigger a Silver Alert and the word goes out. Pictures appear on social media with pleas for the public to be on the lookout.
Often, the person turns up confused and miles from home. It seems the story has a happy ending, but for the family caregivers, it’s not happy and it’s not an ending. More likely, it’s the beginning of a much longer journey.
For some, such an event is the first sign that a family member is dealing with memory loss. For others, there may have been a diagnosis but the family preferred to manage the person, carefully ensuring that he or she follows a predictable routine with a team of trusted family or friends watching closely. But something disrupts the routine and the person with memory loss wanders off. Mom or Dad is just a little confused; it’s nothing to worry about.
Dementia, no matter the form, is a topic that many families in the throes of caregiving do not wish to reveal publicly. People with memory loss can be difficult to relate to in social groups. Repetition of stories or questions is annoying. It’s easier to withdraw than to explain.
Caregivers resolve to do their best to keep their loved one’s dignity intact. They soldier on because there’s no cure. Frequently, family members, especially spouses, tell medical staff, clergy or social workers of their promise never to put their loved ones in an institution. The vow of “in sickness and in health” means they must provide the care 100 percent of the time.
While it’s true that receiving a dementia diagnosis is devastating, there is help. For their own health and well-being, caregivers should not shoulder the burden alone. The issues of social isolation, the preservation of dignity and the need for safety can all be addressed by taking advantage of programs and services designed for people with memory impairment.
In a 2001 paper, University of Wisconsin at Milwaukee researchers support the concept that dementia sufferers need three things to minimize the effects of the disease: security, structure and socialization. Building systems to provide these things will help caregivers manage the challenge of caring for someone with dementia.
The Southern Maine Agency on Aging has developed two programs to support people with dementia. The Family Caregiver Program offers individual support as well as classes and resources for caregivers to help them understand the path of dementia and ways to build support.
Also, the Southern Maine Agency on Aging has opened two adult day centers for people with dementia. Arguably the best of their kind in the country, the centers, located in Falmouth and Biddeford, offer a structured program designed to reflect the individual interests of the dementia sufferer. The centers offer an opportunity to build new friendships, and experience engaging activities. It’s a community where laughter and fun are part of every day. The centers offer a safe place, without seeming restrictive.
At the end of the day, the members, as they are called, go home, full of stories to tell of activities and friends. Caregivers have had a day free of worrying about their loved one’s safety or the guilt of a day spent in isolation at home alone. As a result, caregivers can work, spend time with friends or complete projects or errands without the worry of a loved one wandering off.
Best practices from organizations including the Alzheimer’s Association and AARP strongly urge caregivers to take advantage of programs offering security, structure and socialization to allow dementia sufferers to be the best they can be. Caregivers benefit by getting a break from the burden of caregiving. Doing so enables caregivers to have strength for the longer term. Programs like these can actually delay the need for long-term care for the dementia patient.
Adult day centers offer a full range of professionals to meet the physical, emotional and social needs of participants and family caregivers. The right adult day care center can offer caregivers an invaluable respite opportunity, while providing engaging activities for individuals living with dementia in a safe and stimulating place.
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