Taking on the role of unpaid family caregiver can be difficult even under the best of circumstances. But caring for a loved one who suffers from dementia can present a unique set of challenges. In addition to the burnout and stress faced by many caregivers, dementia caregiving is rife with unpredictability, safety concerns, behavior issues, and the knowledge that the degenerative nature of the disease means things will only worsen for the care recipient.
What are some of the issues that you might expect — for yourself and your loved one — if you take on the role of unpaid caregiver to someone who is suffering from dementia? What are some of the key safety considerations? Are there resources available to help you on this often-difficult journey? Let’s take a closer look at what has been so aptly described as “the long goodbye” of dementia caregiving.
The increasing incidence of dementia
The National Alliance for Caregiving and AARP’s Caregiving in the United States 2020 survey examined 1,392 caregivers ages 18 and older in the U.S. Conducted every five years, the most recent survey uncovered some notable trends.
More than 1 in 5 Americans (21.3 percent) — 53.0 million adults — is a caregiver, having provided care to an adult or a child with special needs at some point in the past 12 months. That is up from the estimated 43.5 million caregivers in 2015. As a subset of these 2020 figures, there are 41.8 million caregivers of recipients who are age 50+. That’s 16.8 percent of adults serving as caregiver for a senior, a number that is up from 14.3 percent/34.2 million people in the 2015 survey.
The incidence of dementia caregiving also has gone up in the last five years, which includes people with Alzheimer’s disease and other memory-impairing conditions. Compared to 2015, 2020 caregivers were 6 percent more likely to report their adult care recipient needs care because of memory problems (32 percent, which is up from 26 percent in 2015). This includes care recipients with dementia or Alzheimer’s (26 percent, up from 22 percent in 2015).
These figures reflect not only the growing number of people taking on caregiving responsibilities for a loved one with a memory issue, but likely also the increasing incidence of neurodegenerative conditions like Alzheimer’s disease, and the growing number of seniors in this country.
For example, according to the Alzheimer’s Association, approximately 6.2 million Americans who are 65 and older currently are living with Alzheimer’s dementia. That’s 1 out of 9 people in that age bracket. As the number of older Americans rapidly increases in the decades to come, it is estimated that by 2050, 12.5 million Americans age 65+ will have been diagnosed with Alzheimer’s disease.
We are in for a true crisis in this country: Who will take on the dementia caregiving role for all of these seniors?
>> Related: The State of Unpaid Family Caregiving in the U.S.
What to expect from dementia caregiving
Caregiving can be a tangible exhibit of love and dedication to a family member who needs assistance, but there are almost always costs (literal and figurate) paid by the caregiver. We have discussed numerous times the physical, emotional, and financial toll that caregiving can exact upon the caregiver.
But in addition to the “normal” strains created by caregiving, if you have a loved one with dementia, there are some unique considerations you should factor in.
Dementia caregiving can result in even more stress, health problems, and burnout than that experienced by other caregivers. It is a progressive disease, which creates unpredictability, as well as a wide range of issues for the care recipient such as:
- Wandering, confusion, disorientation, poor judgment/decision-making, and other safety concerns
- Mood changes, fearfulness, and unfounded suspicions of family/friends, which can lead to injury of the patient or the caregiver
- As the disease progresses, issues with walking, speaking, and swallowing
All of this is of course on top of the caregiver’s emotional strain of watching their loved one deteriorate and change. How will you, as a dementia caregiver, address all of these issues to keep your loved one safe and well-cared for? It can be a daunting task to say the least.
>> Related: Understanding Memory Loss and Memory Care Communities
Safety tips for dementia caregiving
The Alzheimer’s Association has a wealth of helpful information for people who have taken on the role of dementia caregiver. They offer important tips to keep your loved one safe as their dementia progresses. A few highlights from among their extensive guidance:
- To address wandering, ensure all basic needs are met such as toileting, nutrition, and hydration. You may want to consider reducing – but not eliminating – liquids up to two hours before bedtime so your loved one doesn’t need to find the bathroom during the night.
- If the person is no longer driving, remove access to the car keys. This can prevent wandering as well as car accidents.
- Consider technology tools that can help keep people with dementia safe including wearable GPS tracking devices.
- In the kitchen, prevent unsafe stove use by applying stove knob covers, removing the knobs, or even shutting off the gas when the stove is not in use. Disconnect the garbage disposal. Discard toxic plants and decorative fruits that may be mistaken for real food. Remove vitamins, prescription drugs, sugar substitutes, and seasonings from the kitchen table and counters to avoid unsafe use.
- Consider removing weapons from the home or storing them in a securely locked cabinet. Guns can pose a significant risk for everyone when someone in the home has dementia since they may grow fearful, paranoid, or not recognize loved ones.
>> Related: When Memory Issues Are Cause for Concern
Resources for caregivers
The role of dementia caregiver can be full of ups and downs. It can be a true gift to a loved one who is experiencing this terrible condition, but it can also be stressful, frustrating, depressing, and costly. There are resources available to help you along this journey, however.
The Alzheimer’s Association has extensive caregiving information and resources for people taking care of someone with Alzheimer’s or another dementia diagnosis. They offer free educational programs, online and in-person support groups, as well as comprehensive information on what to expect, safety considerations, paid in-home care options, and more.
Should in-home caregiving responsibilities become too much to handle, or you are concerned about safety issues, there are many wonderful memory care communities around the country. These specially designed residential facilities provide people with dementia a safe and caring environment.
More and more continuing care retirement communities (CCRCs, or life plan communities) also have dedicated memory care units (also called special care units) to address the rising number of CCRC residents with dementia. There is an important caveat, however. Prospective CCRC residents cannot obtain a continuing care contract if they already have been diagnosed with dementia or Alzheimer’s disease prior to move-in.
>> Related: 5 Reasons to Make Your CCRC Move Sooner Than Later
Care for the caregiver
If you are serving as a dementia caregiver, it’s critically important to remember to take care of yourself. This can be difficult for many caregivers, creating feelings of guilt. But just as they tell you on an airplane: In an emergency, you must put on your own oxygen mask first before you can help others. It’s okay to ask for help and take some time for yourself.
If another family member or friend isn’t able to help, in-home paid caregivers, respite care programs, and residential care communities can offer unpaid caregivers a reprieve from their responsibilities.
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