Phrase of the Month: Care Partner

Over the last year we've started using certain words and phrases more and more. One of these is "dementia care partner" vs. "dementia caregiver."

We identify a dementia caregiver as anyone who provides care in some way for a person living with dementia. A dementia care partner is usually someone who lives with the person and is responsible for their whole care. That is they may not provide the care, but they are responsible for making sure it is provided.

While a caregiver may provide only physical care, a care partner's job is much more diverse. The responsibilities of a care partner, also called a family caregiver, include many challenges but also with many blessings. The job can involve any of the following and more:

• The physical, hands-on care of their love one. Helping with dressing, toileting, bathing, eating and all those many daily living activities.
• Care management. Arranging for care and services such as doctor's appointments, lab tests, physical and occupational therapy related to LBD and other medical conditions.
• Assessment of a loved one's condition. Deciding when to call a doctor or ask for other help or guidance.
• Social manager and companion, making sure that their loved one continues to have social contact in ways that are less anxiety producing.
• Legal manager. Making sure all the necessary legal paperwork is in place so that as the disease progresses, transitions or responsibility will be smooth.
• Financial manager. Being responsible for the management of regular income and expenses.
• Housekeeper, cook and dietitian. Making sure the home is safe and clutter-free and the food is not only attractive but brain supportive.

Along with all of these jobs, the care partner also usually has a previous relationship with their loved one: spouse, child, or other relative. Jim's was that of spouse. My loved one and I were sisters. My daughter cares for her mother-in-law.

Each of these relationships started out different and involved a variety of challenges as the disease made the roles change. These transitions can be difficult, as responsibilities once held by the loved one pass by necessity to the care partner--not always willingly on the loved one's part!--and as activities once enjoyed by the two become less enjoyable or even impossible. Next week's blogs will explore some of these challenges and identify some blessings.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.