Preparing for Alzheimer’s and dementia care
Authors: Doug Russell, L.C.S.W., Tina de Benedictis, Ph.D., and Joanna Saisan, M.S.W. Last updated: March 2016.
Is it time to move?
As Alzheimer’s progresses, the physical and mental demands on you as caregiver can gradually become overwhelming. Each day can bring more challenges. The patient may require total assistance with physical tasks like bathing, and dressing, as well as greater overall supervision. At some point, you won’t be able to leave your loved one alone. Nighttime behaviors may not allow you to sleep, and with some patients, aggressive behaviors may exceed your ability to cope or feel safe. Every situation is different. Sometimes the gap can be bridged by bringing in additional assistance, such as in-home help or other family members to share the caregiving burden. However, it is not a sign of weakness if moving to your loved one to a memory care community seems like the best plan of care.
It’s never an easy decision to make, but when you’re overwhelmed by stress and fatigue, it’s difficult to maintain your caregiving standards. If the person with Alzheimer’s is living alone, or you as the primary caregiver have health problems, this option may need to be considered sooner rather than later. When considering your caregiving options, it’s important to consider whether you are able to balance your other obligations, either financial or to other family members. Will you be able to afford appropriate in-home coverage if you can’t continue caregiving? Talk to your loved one’s medical care team for their perspective as well.
Needing more care doesn’t mean you don’t care
If the best choice is to move the Alzheimer’s patient to a memory support community, it doesn’t mean you will no longer be involved in their care. You can visit as frequently as you want and ensure your loved one gets the care he or she needs. Even if you are not yet ready to make that step, doing some initial legwork might save a lot of heartache in the case of a crisis where you have to move quickly. The first step is finding the right place for your loved one.
Visiting a Alzheimer’s Care Community
Once you’ve determined the appropriate level of care, you’ll want to visit the community—both announced and unannounced—to meet with the staff and otherwise evaluate the home. You will also want to evaluate the community based on their experience with Alzheimer’s residents. Communities such as Pathways Memory Care that cater specifically for Alzheimer’s patients should have a designated area, specific programing and staff that is experienced and trained in memory care diseases.
Questions to ask at the community include:
- Policy and procedures –Does the program require the family to supply a detailed social history of the resident (a good sign)?
- Environment – Is the community clean? Is the dining area large enough for all residents to use it comfortably? Are the doors alarmed or on a delayed opening system to prevent wandering? Is the community too noisy?
- Staffing – What is the ratio of residents to staff? (5 to 1 during the day, 9 to 1 at night is normal). What is staff turnover like? How do they handle meals and ensure adequate hydration, since the person can often forget to eat or drink? How do they assess unexpressed pain—if the Alzheimer’s resident has pain but cannot communicate it?
- Staff training – What training for Alzheimer’s care do they have? Does the facility provide staff with monthly in-service training on Alzheimer’s care?
- Activities – Is there an activity plan for each resident based on the person’s interests and remaining cognitive strengths? Are residents escorted outside on a daily basis? Are regular outings planned for residents?
- Services – Does the community provide hospice services? What were the findings in the most recent state survey?
