A diagnosis of dementia, a significant loss of intellectual abilities such as memory, can feel overwhelming to both the patient and their loved ones at first.
Learning about the specific condition, such as Alzheimer's disease, and how it progresses, can help everyone feel more confident about the future, but there are other important and often overlooked steps you should take.
Have conversations about the type of care the patient may need and want in the future and make sure those needs and wishes can be met.
It is a gift when loved ones don't need to guess or struggle over what the patient might want. Often, when it's time to make challenging, stressful decisions it is because the patient can no longer speak for themselves.
While it's easy to get caught up in addressing immediate needs or delaying uncomfortable conversations for the future, crucial questions should be answered in the earliest stages while the patient can express their wishes.
Questions should include:
Who does the patient want as their medical spokesperson when they cannot make decisions or express their needs?
What medical interventions would they want? For example, when they can no longer eat, would they want a feeding tube to sustain them?
Are their finances arranged so they can receive care without creating financial hardship?
A great resource for this planning is an attorney specializing in elder law who can help you create the appropriate documents and make financial arrangements so that care of your loved one can be continuous and seamless.
Seek out a support group. Through a support group, family members and the patient can gain insight about dementia and care needs by hearing expert presentations and talking to other families going through similar experiences.
Determine if, when and where the patient would want to receive care outside the home.
Patients with appropriate support networks can thrive for years in their home, but because many families struggle with the decision to transition their loved one to a care facility as their condition declines, this is an important decision for the patient to consider in the earliest stages. They can also help establish criteria, based on the stages of dementia, which would signal a time to make the transition.
While many believe that a dementia patient needs to be in the familiar surroundings of home, a residence designed to meet the needs of a dementia patient can help them thrive by providing a smaller, safe environment that they can navigate along with structured activities and social interactions.
In addition, family and friends removed from the day and night caregiving role often experience less physical and emotional stress and can spend more quality time with their loved one and being their advocate.
The type of facility needed depends on the patient's stage of dementia, as well as if they have other medical conditions or care needs. Many families are surprised to learn that residential care for a dementia patient is not covered by Medicare. By learning about the facilities available and what they provide early in the process, families can involve the patient in touring and preparing to finance the transition when needed.
Holladay is the nursing home administrator at Susquehanna Health Skilled Nursing and Rehabilitation Center.