Guidance and Support
Our ElderHealth team frequently receives inquiries and actively engages in educating, guiding, and supporting our members and their families regarding the following questions related to caring for someone diagnosed with a neurocognitive disorder.
“How do I know when it is time to make a change to the amount or type of formal care my parents are receiving in their home?”
“Is it time to explore the options for my spouse and I to move from one level of care to another within our continuing care community?”
“I notice it is getting harder for my parents to live on their own and take care of themselves and each other. Is it time to think about a move from their home to a community placement?” How do I bring up this topic and/or take action on my own without eclipsing their dignity and self-determination?”
Consult these 6 tips on the road of decision making for yourself or on behalf of someone in a role as caregiver/care partner/care coordinator.
- Anticipate and build in access to appropriate levels of care.
- Support for those living with medical issues that are chronic and progressive in nature will benefit most with an approach that anticipates and builds in access to appropriate levels of care as conditions progress. The goal in doing so is to avoid crisis management and hopefully reduce the need for hospital admissions and/or moves at a later stage of illness progression.
- Consider what may motivate someone to open the door to a difficult conversation, such as when discussing a move.
- In some instances, one partner may identify more as being the “well” spouse, so appealing to the need of the other to have more support in order to stay healthy and have a better quality of life for longer may work. Phrase questions in such a way as to involve them in early planning. For example, if there is potential to arrange a tour and lunch at a community, you could say, “We have been invited to meet for lunch on Wednesday or Thursday next week.” “Which day do you prefer?”
- Explore options for a move from Independent to Assisted Living.
- An environment with a smaller footprint and more immediate access to caregivers, more defined routines, activities and structure, and medication management, ie, paradoxically, offers the potential for individuals with neurocognitive disorders (from mild to late stage) to experience less anxiety and feel more independent. When executive brain function diminishes, individuals may feel more relief and experience a higher quality of life by reducing the energy and time they spend managing their own care and daily routine. Often, underneath all the distress lies a layer of grief for the loss of control and competence experienced.
- Initiate a plan for a move sooner than later in the context of neurocognitive disorders.
- Moving from one home/location to another is always high on the stress scale under most circumstances and at any stage of life. The later mild to moderate stage of cognitive loss presents the preferred time to make a move because there is still strength and ability for a person to adapt well to new routines and structure even though the ability to learn and recall new information is diminishing. Making a move towards an environment suited to manage activities of daily living across the spectrum of disease progression will be worth the short term disruption and adjustments that will accompany such a move.
- Take a Both/And approach to thinking about the situation in order to minimize worry and move forward.
- We can both value and promote our parents independence in decision making when possible and take action to plan for their future care needs and minimize risks when effects of caregiver stress and other vulnerabilities surface.
- We as the adult children are both concerned, care coordinators/caregivers and individuals with our own needs.
- Pay attention to the signs, symptoms or outcomes of particular situations that arise.
- What someone says they need or don’t need may look very different through the lens of what actually occurs. Notice patterns of difficulty in terms of physical function, cognitive processing, and overall management of daily living. Ask yourself whether you notice things improving, declining or staying the same over a period of 1, 3 and 6 months. If the answer is “declining” or “staying the same” it is a very appropriate response to consider increasing care in some form at this time.
Navigating the twists and turns and uncertainties of serious, chronic and/or progressive illness is often like driving on a dark or dimly lit road without a navigation system. It is challenging to make decisions, often on behalf of someone else, about when it’s time to slow down, take a break, keep going, or recalculate the route on the road of managing and living with progressive illness. Consider these tips as signs along the way to help guide and support you and your loved ones on the journey.