An Essential Checklist for Caregivers of Dementia
One of the biggest challenges in our aging society is the prevalence of dementia,
technically defined as a syndrome (or group of related symptoms) associated with
ongoing decline in brain functioning, and typically affecting memory, thinking, and
social abilities that interferes with daily life.
Of the 53 million adult caregivers in the United States, about one-third are
caring for someone with dementia. And of course, the number of people with
dementia is increasing every day because people are living longer, and we have
10,000 baby boomers turning 65 every day!
Dementia is a progressive condition, worsening over time, yet with speed of
deterioration differing between individuals. Age, general health and the underlying
disease causing brain damage all impact the pattern of progression. For many, the
progression can take years – but for some the decline can be sudden and rapid.
Perhaps most frightening is the length of time for required care: the average time of caregiving is four years, whereas Alzheimer’s and dementia caregivers provide care on average for 5~9 years.
Recently, a caregiver wrote to Caregiver Wellness Retreat, giving her best advice as an
Alzheimer’s caregiver for her mom:
Get help when you need it
Forgive yourself for not having superpowers
Don’t let Alzheimer’s claim YOUR life too
Get help for Caregiving when you need it.
The first step in terms of “getting help when you need it” is early screening when you think your loved one may be having problems. Early screening leads to early detection – and contributes to treatment that can delay the onset of symptoms, improving the quality of life for both you and your loved one.
Knowing sooner also gives you valuable time for long-term care planning, and for organizing estate affairs. The Alzheimer’s Association offers an excellent and easy-to-use worksheet (10 Early Signs and Symptoms of Alzheimer’s) for helping you to identify the early signs and symptoms of Alzheimer’s, and for judging whether the behavior in question is related to “normal aging” or is likely more serious.
All of this can be even more difficult when you are caregiving “from afar,” but having
that distance may actually allow you to notice signs of deterioration in your loved
one, since you are not seeing them on a regular basis.
It’s also important to keep in mind that some dementia symptoms can be caused by treatable medical conditions that are NOT dementia-related. So again, “information
is power” when it comes to early screening and detection.
A caregivers checklist for getting the help you need:
Get a medical assessment of your loved one’s condition
Get all financial and legal documents in order for you and your loved one
Start thinking about when placing your loved one in a professional care facility might be optimal
While your care receiver is still able, have difficult conversations with them about their wishes
Make sure you're registered with your care receiver’s GP/medical team as their primary caregiver
Check with federal and state agencies to determine what benefits and services might be available
Identify training courses that can help you prepare yourself
Identify local support groups
Whether you are living in close proximity to your loved one, or caregiving from afar, be on the lookout for “MCI” (mild cognitive impairment) – a condition that is sometimes easily taken for normal aging. The signs of MCI are the same as for Alzheimer’s, including memory lapses, judgment or decision-making difficulties, trouble with familiar tasks, and behavior or mood changes, among others.
MCI can have many causes, but it is often and early sign of Alzheimer’s. Again, the sooner you can recognize and identify it, the sooner you can make decisions with your doctor as to how best to manage it.
Forgive yourself for not having caregiver superpowers
Regardless of where you are in your journey of caring for your loved one, make an
active decision to cut yourself some slack. You do not need to be perfect, and this is
an extremely challenging situation. Maintaining your own health and emotional
balance is a good strategy for coping and making it through what is no doubt a
difficult and painful time.
Managing your own health and emotional balance as a caregiver:
GET HELP – see previous section!
Explore meditation as a way of re-grounding (if you’re new to meditation, start small, with 5-minute guided meditations)
Re-commit to your own self-care, including: getting adequate sleep, eating healthy foods, getting at least 10 minutes a day of body movement, carving out some time for yourself, reading-listening-watching something enlightening
Seek out counseling or a support group when you are struggling – there are many resources available, but you must ask.
Take breaks from your caregiving responsibilities; you are only human, after all!
Don’t let Alzheimer’s - another person’s illness - claim YOUR life too
As the dementia progresses, your loved one’s needs will continue to expand, placing
more strain on you as the caregiver, and leaving your loved one more vulnerable. Sometimes making hard choices is exactly what is best for the other person.
Once your loved one is unable to care for themselves and live independently,
moving them into a residential setting will give them the benefit of 24-hour care and
support. While the situations vary greatly based on individual caregivers and their loved
ones, many professionals agree there is little downside to placing a loved one in a
facility “too soon.” On the other hand, there are many disadvantages to delaying
your decision, including:
Problems with medications
Injuries from increasing limited mobility
Wandering and getting lost or injured
There is also the prolonged effect of strain and stress on YOU as the caregiver, which
cannot be underestimated.
Author, Speaker, Founder
AMI and TheCaregivingJourney.com
Debbie Howard is a former caregiver who served as both long distance and live-in caregiver during her Mom’s dying days in South Carolina, while running her Tokyo-based market research consultancy.
With the launch of AMI and TheCaregivingJourney.com in 2016, Debbie combined her caregiving experience with her 40 years as a communications and market research pro to support caregivers in navigating their caregiving journeys with more grace and ease. especially when it comes to self-care.
Today, she leads workshops and blogs on this topic, and helps companies develop programs to support their employees in balancing their caregiving responsibilities at home with their work.
Her book, The Caregiving Journey: Information. Guidance. Inspiration, is available on Amazon.