Moving through different seasons in life, one invariably finds themselves wearing various hats. For me, in addition to being a psychologist, I am in that delicate place of being a caregiver to my parents and my young children. Many who read this will be in the same situation. Having advanced training on brain development and aging has helped how I support my father who has dementia, but the personal realizations I have learned about what it is like to be a person (and patient) with dementia has given me greater empathy for others in similar situations. Here are some nuggets from my journey thus far:
- Ensure physicians and other medical providers talk to your loved one with dementia, not just to you. It can be incredibly demeaning to your loved one for them to be talked about, rather than to. It can even result in an adversarial attitude that your loved one has toward their providers. If the provider talks to you instead of your loved one, repeatedly bring your loved one into the conversation by asking if they have questions, what else they wanted to mention, or for their thoughts about what has been shared.
- Provide your loved one with opportunities to be as independent as possible. Sometimes this means walking a fine line between autonomy and safety. My dad was a very talented computer engineer through retirement, while moonlighting as a woodworker. While his engagement in these activities now is very different than before, our family has maintained his access to select tools. There is always concern for safety issues (hackers & scam artists are prowling, power tools have no mercy, etc.), but in the end, removing these items from my father’s use would cause more harm than good. There will, however, come a day that we have to reduce even further access to these tools. These decisions are not made lightly, and will vary from person to person.
- Engage your loved one with activities they have previously enjoyed. While engaging in the same activity repeatedly may not seem to serve a purpose to caregivers, doing so brings comfort and familiarity to your loved one with dementia. Finding ways to reexperience previous hobbies that are now too difficult is one way to do this. For example, I recently came across a local club that flies model airplanes (another one of my father’s previous hobbies). While he would not be able to build models, nor could he fly them, allowing him to join in with this congenial group once in a while is a way for him to reconnect to pleasant memories.
- Bring up topics of milestones, vacations, and accomplishments. This can serve to enhance feelings of feeling like themselves, and also be used in moments of increased frustration or irritability (which can increase over the progression of dementia). I have found that making my father feel heard in his frustration (note: do not ignore feelings), while rerouting conversation to more pleasant topics has fostered a brighter mood for him.
- Steer away from trying to again remind the person that they have dementia, when they are adamant that they do not. For many individuals in the more moderate stages of dementia, they lack insight into how significant their limitations or difficulties may be. They do not recollect in the moment the difficulty they had yesterday in trying to complete a previously mastered task. They may talk about how they could drive again if just allowed to try or should be able to do some other task that has since been removed. This is another opportunity to identify the emotion and funnel your loved one into other activities that they still have within their capabilities.
- Seek additional support for your loved one with dementia. If your loved one can remain in their home, getting companion support from an agency can increase their independence and opportunity to get out of the house for more than just medical appointments. While these services are an out-of-pocket cost, they can be a way to bridge the gap between nursing home/memory care placement. Also, getting approval for rideshare services can also be a productive option. Both of these can reduce some of the strain that may be placed on you as a caregiver.
- Seek support for yourself. There are local and national groups designed to serve the needs of family members of those with dementia. Accessing valid information from experts in dementia care can help guide you as your loved one’s symptoms progress. Likewise, participating in support groups can foster a sense of belonging rather than isolation, as caring for a loved one can often feel.
Some local/national resources to consider:
- Visiting Angels (visitingangels.com, resources for in-home care)
- Good New Consulting (goodnewsconsulting.com, consultants in dementia care)
- Rabbit Transit (rabbittransit.org, rideshare services)
- Karen Sullivan (www.ICareForYourBrain.com, a geriatric neuropsychologist offering resources about aging and dementia)
- Alzheimer’s Association (https://www.alz.org/)