If you are a caregiver for a loved one with Alzheimer’s disease, you are likely familiar with “caregiver stress.” It’s a serious condition, one that has been studied in clinical research trials extensively. Caregiver stress (also called caregiver overload) is not simply a negative response to an overly busy schedule, but rather, a serious physical and emotional condition.
Alzheimer’s caregivers have signed on for a tremendous undertaking, many not knowing exactly what they were in for during the early stages of the disease. A caregiver wears many hats from being a care planner, chauffeur and cook to a financial manager, housekeeper and 24/7 nurse.
As the disease progresses to the dementia stage, caregivers must learn to cope with some considerable challenges.
These include behavioral symptoms and other safety issues like wandering, not to mention the overwhelming loss of the person once known–who’s personality may have become unrecognizable.
The more hours a caregiver devotes to their loved one with Alzheimer’s, the higher the risk of caregiver overload and stress-related health issues. These may include anxiety, depression, physical exhaustion or any other mental/emotional or physical maladies.
The Impact of Caregiving for Alzheimer’s
Many studies have been conducted to evaluate the impact that caregiving has on family caregivers. One study found that caregivers had a 6.3% higher rate of anxiety and depression, as compared to non-caregivers with a 4.3% incidence of emotional disorders. Other types of mental illness were also noted in caregivers at a rate of 17.4% (compared to 10.9% in non-caregivers). Disabilities, physical health-related illnesses and psychiatric disorders were noted at a higher rate in caregivers compared to non-caregivers.
The Alzheimer’s Association polled dementia caregivers and discovered that 35% said their health has gone downhill due to caring for a loved one with Alzheimer’s or dementia. Only 19% of those caring for a person in the early stages of the disease reported health problems due to caregiving responsibilities.
The risk of getting Alzheimer’s is higher for dementia caregivers than for others and many have unknown conditions such as high blood sugar, hypertension, sleep disorders or weight gain due to stress.
Another recent clinical study published in The International Journal of Geriatric Psychiatry discovered that caregiver stress may put a person at higher risk for cognitive decline, leading to a higher risk for Alzheimer’s. The study evaluated over 200 people with the disease and their caregivers, evaluating their daily exercise routines. The findings were that regular exercise may help to protect against conditions such as depression while lowering the risk of Alzheimer’s disease for caregivers.
The Risk Factors for Caregiver Stress
Many family caregivers are working to juggle the care of two separate households, a large percentage work full or part-time jobs, have relationships and care for their own children while devoting much of their time to a loved one with Alzheimer’s. These caregivers are at higher risk for caregiver depression and other mental and physical health conditions, like stress and overload than those who do not have as many demands on their time.
The National Institute on Aging reports that dementia caregivers must take regular time off for their health and wellbeing. Learning about the high risks for caregiver stress and integrating tools to cope effectively with the toll that caregiving can take, is one of the most important jobs for caregivers.
Below are 10 of the top risks of caregiver stress/overload:
- Being a live-in caregiver.
- Being a woman.
- Being an older caregiver.
- Being socially isolated.
- Caring for a person with Alzheimer’s for many hours each day.
- Experiencing financial problems.
- Having depression.
- Having a lower educational level.
- Not having good coping skills.
- Not having many options (such as help from family or friends for respite care).
Self-Questionnaire for Caregiver Stress from Alzheimer’s Risks
Take the following self-questionnaire at least once a month.
Particularly if you identify several of the highest-risk factors above:
- Are you taking regular time off to care for yourself and have fun?
- Do you drink alcohol often or use drugs to cope with stress?
- Do you feel socially isolated?
- Do you feel you have a low energy level?
- Do you have pain such as headaches, muscle aches or other discomforts?
- Do you have trouble falling asleep often?
- Do you often complain of being exhausted?
- Have you been diagnosed with high blood pressure?
- How do you feel emotionally? Are you often angry, depressed or sad, do you feel a sense of despair?
- How is your appetite?
- How is your sleep, are you getting a solid 8 hours per night, or do you wake frequently?
- How often do you exercise?
- How often do you see your doctor for a checkup and blood pressure/cholesterol check?
- Is your cholesterol level high?
- Is your diet healthy, or do you oftentimes eat quick processed foods?
If you note problems in any of the categories above, seek help immediately from hired professional respite care or your support group. Make an appointment with your physician if you identify emotional or physical symptoms (like chronic anxiety or pain, depression, high blood pressure, drinking too much). In addition, be sure to schedule a yearly health screening.
Tips for Coping with Caregiver Stress
- Be sure to see your healthcare provider for yearly checkups.
- Consider an adult day center (many have transportation and can pick up your loved one every day).
- Don’t be afraid to ask for help.
- Go for a walk each day with the care recipient if possible. It’s a great way for both of you to get some exercise and fresh air while enjoying an activity together.
- If a family member or friend offers you help, take it.
- If family members want to help, but can’t handle direct care, ask them to clean the house, cook, do lawn care, run errands or other miscellaneous jobs.
- If you are overwhelmed, break down your to-do list into small manageable tasks and prioritize which are most important to tackle first.
- Make time as often as possible to stretch, and do physical exercise even if it’s only for short time spans. 5 minutes here and there throughout the day is much better than not working out at all. Note, always consult with a healthcare professional before starting any workout regimen.
- Put aside time each day for stress management. Consider a Certified Mindfulness class (available at many local hospitals), meditation course, or a yoga class.
- Search for, and start attending a local caregiver support group.
- Seek help from volunteers (perhaps at a local church or community center), or hire help for respite care if you can afford it.
- Socialize as much as possible. New studies are finding that socialization is as impactful on health and wellness as quitting smoking, managing blood pressure, or losing weight. If you have trouble getting out of the house every day, consider video chatting, or at least talking on the phone with family and friends as often as possible.
- Take regular time out for yourself to enjoy life. Optimally caregivers should take off once a week to enjoy an entire day to themselves, once a month for a weekend getaway or just to relax for a couple of days, and at least once a year for at least a week of extended time off. This is where asking for help and employing respite care (volunteers or paid help) comes in.
- You may need to give specific tasks to people who want to help, oftentimes they don’t really know what, specifically, they can do to help.
By taking time off, caregivers allow themselves to go the distance. Without attention to self-care, many caregivers become too ill to continue caring for their loved one. Fighting the battle against Alzheimer’s disease is not simply about caring for your loved one, it also means taking control of your own physical and mental health and wellbeing.
Resources for Caregivers
A Caregiver’s Guide: Information and resources about caring for a person with Alzheimer’s (and other types of dementia).
ARCH National Respite Network: Helps caregivers locate respite services in their community. Offers programs, services, and locator tools, as well as respite training webinars.
The Alzheimer’s Association Caregiver’s Center: Includes links to legal assistance, access to finding local resources, educational information on various stages of Alzheimer’s disease, a 24-hour helpline for support, access to support groups, message board and online community.
The Alzheimer’s Association Recommended Reading: Informational and inspirational books recommended for Alzheimer’s caregivers.
The Alzheimer’s Association: Booklet on self-care for caregivers.
The Alzheimer’s Association Respite Care Directory
The National Institutes on Aging for Alzheimer’s Caregivers: A great online source of information for caregivers of people in the later stages of Alzheimer’s, building a support network and community resources (such as respite services, meals, and transportation).
Family Caregiver Alliance: Includes a nationwide map, click on your state to find education and services for family caregivers, caregiving products, education on debilitating diseases (such as Alzheimer’s), home care services, legal help and advocacy, extensive information on local community services.
Caregiver Action Network: Offers expert advice from former or current caregivers, tips for caregivers, volunteer support network listing in over 40 states, caregivers toolbox, caregiver stories, coping with Alzheimer’s.
Which Alzheimer’s risks were you surprised to see on this list? Which were you already aware of? We’d like to hear your thoughts in the comments below.
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