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Caring for Someone with Dementia

Posted on by Tim Gothmann

By: Chris Rosenthal Director of Aging and Disabilities Services of Jewish Family Service of St. Paul

More than 30 years ago, “The 36 Hour Day” (Mace and Rabins) was written to offer support and information to families caring for a family member experiencing dementia. The authors recognized that the demands of being a caregiver often overwhelm and make caregivers wish they had 36 hours in a day!  Since then, much has been learned about dementia and the diseases that cause it. We have also learned that it is possible to find meaning and joy in life for both the caregiver and the person with dementia. With education and support, caregivers are better able to manage the challenges and frustrations of caring for someone with dementia and provide a better quality of life for their loved one.  More importantly, caregivers are recognizing that this is not a job to do alone; being a caregiver requires the support of many. It “takes a village”.

Four primary areas of concern arise for most caregivers who are caring for their loved one with dementia (The Caregiver Notebook, 2015).

    1. Safety.  Decreased cognition and memory can place people with dementia at risk for their safety. “How do I tell Dad that he can no longer drive?” or “How do I keep Mom from wandering out the front door”?
    2. Health.  Diseases that cause dementia, the most common one being Alzheimer’s disease, impact a person’s overall health in many ways.  Caregivers often struggle with the challenges of ensuring a healthy diet for their loved one or being certain that a loved one is getting enough exercise and stimulation.
    3. Caregiver well-being.  When caregivers focus so much attention and energy on the person they are caring for, it is all too easy to ignore one’s own needs. It is a concerning statistic that a spouse caring for his/her partner is 40% more likely to die before the person for whom care is being provided.
    4. Caregiver skills and techniques.  People with dementia, because of the cognitive challenges they face, often express themselves through behaviors that don’t make sense to the caregiver. The person with dementia, using the cognitive resources available to him/her, respond in ways that can confuse and even upset family members. To reduce stress, caregivers need to learn new ways of responding and communicating.

 

 

So how does a family go about “building a village” to support both the caregiver and the person with dementia to address these concerns?

  • Support groups. Many caregivers find support groups invaluable. Simply realizing that you are not alone in your caregiving journey offers hope.  Other caregivers can be “wells of wisdom”, sharing the creative ways they have learned to care for their family member and to respond to the behavioral expressions of their loved one.  
  • Education. The Alzheimer’s Association is an good source of information. Their website offers a myriad of articles and publications that can be downloaded. The local Minnesota/North Dakota chapter offers numerous support groups and educational sessions occurring throughout the metropolitan area (www.alz.org/mnnd).  On April 30th, the Twin Cities Jewish Community Alzheimer’s Task Force sponsored a half-day conference for caregivers at Adath Jeshuran, titled, “Keeping the Spirit Alive: A Conference for Caregivers and Those Supporting a Loved One with Dementia”.  
  • Dementia coaching and counselling. Many caregivers find what they need most is the opportunity to meet one-on-one with a knowledgeable professional for counselling and support around care needs for their family member.  Jewish Family Service of St. Paul (JFS) has certified dementia coaches on staff to assist families. These coaches work with caregivers to develop strategies to address concerns specific to the issues presented by their family member experiencing dementia.  Coaches address safety and health concerns presented by families and teach them caregiving skills, as well as self-care strategies.  Coaches also assist persons with dementia and their families secure community resources to address current needs and to plan for future needs.

Caregivers need to know that they are not alone.  It “takes a village” when caring for someone with dementia.  To receive more information about support, education and coaching available, call Chris Rosenthal, JFS Director of Aging and Disability Services, at 651-698-0767 or email her at crosenthal@jfssp.org.

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