Caregiving for Dementia: Go with the Flow as Much as You Can
One of the most difficult lessons for those who are caregivers for persons with Alzheimer’s disease or other dementias to learn is to not fight futile battles. The mind over matter strategy does not work. We are used to being persistent to teach or learn new things and used to the benefits of practice in learning new behaviors, skills, or information. These practices offer diminishing returns as the memory loss progresses. Caregiving – whether in a facility or at home – needs to be built around what still works and needs to increasingly involve external prompts to initiate even retained skills.
Let’s consider some examples of strategies that were helpful to several of my clients. The intention was to reduce frustration, errors, and conflict as well as to improve stimulation for persons in early to middle stage dementia.
- Those in early to middle dementia have lost the capacity for making financial, legal, or medical decisions. They can neither provide reliable self-report and nor report back what they are told to do. For example, the forgetful person needs an advocate to provide accurate history or symptoms during medical appointments. He or she cannot complete paperwork for medical or other decision-making events. All medical as well as legal and financial appointments must be made and attended by the primary caregiver or a knowledgeable representative.
- Those in early to middle dementia often have progressive decline in standards of dress and grooming. They need at least supervision (sometimes prompts) to maintain ADLs. The forgetful person may need daily assistance with caring for his teeth and gums, shaving, bathing, choice of clothing, and prompts to change to clean cloths. Standards such as how many showers per week or whether it is really important to shave each day need to be considered in the light of which battles are worth the energy to fight. How many showers a week are really necessary? Do clothes have to match well?
- Those in early to middle dementia have significant decline in judgment as well as monitoring the passage of time and are at risk of getting lost on outings. They should not attend group outings without a one-on-one companion.
- Those in early to middle dementia need stimulation via routine and regularity. Forgetful persons need to be engaged in the familiar not the new. They need activities that focus on productivity rather than competence and short-term memory. If the forgetful person can still play the piano, make the opportunity available each day and guide them to the piano with an invitation. If he or she enjoys movies, going to lunch, playing bridge, doing art, or playing golf, invite don’t ask. It’s better to say, “Let’s go to a movie” rather than asking, “Do you want to go to a movie?”
- Caregivers for those in early to middle dementia need support and guidance. Don’t go it alone.
I hope this gives caregivers some ideas that reduce power struggles that they cannot win. Managing those with dementias can often go much more peacefully if caregivers choose battles carefully and don’t make unrealistic demands on either the person with memory loss or themselves.