The Struggles of Dementia Caregivers
Dementia affects more than 5 million Americans every year, and over 15 million people in the US play a crucial role as caregivers for patients with Alzheimer’s and other forms of dementia. There is no doubt that dementia can be a debilitating condition. What you may not realize, however, is that it’s not just the people with dementia who suffer — it’s their caregivers, too. The increasing burden of care given to dementia patients’ families is a mounting crisis when dementia prevalence is expected to double every two decades.
Effects on Mental and Physical Health
Worldwide, most dementia patients are looked after by family members rather than in nursing homes. Taking care of someone with dementia is a difficult and emotional experience. The person you know and love may no longer recognize you or even remember your name. It’s heartbreaking to watch them struggle to complete everyday tasks. You may spend hours listening to them repeat themselves or waiting to find their words. They may even lash out at you in anger or become upset over minor mistakes.
Being a dementia caregiver can take a toll on your health and happiness. Though many caregivers find the experience rewarding, it can also put extreme stress on their personal lives and relationships. Caretakers are at a significant risk for depression, which is a serious mental health issue. It’s estimated that up to 80% will experience depression at some point during their caregiving journey. They tend to have a higher risk of depression than non-caregivers due to the emotional and physical toll of providing care. The Alzheimer’s Association’s ‘2019 Alzheimer’s Disease Facts and Figures Report’ revealed that 60% of caregivers report highly stressful experiences associated with caregiving a loved one with dementia, and approximately 40% suffer from clinical depression.
Other common issues include sleep deprivation, loss of appetite, weight gain or weight loss, and lack of interest in activities you once enjoyed. You shouldn’t ignore these serious problems as they can have adverse effects on your health, or they may even make you incapable of caring for your loved one.
High levels of Stress
A caregiver’s job is more than a full-time obligation. On average, caregivers spend about 24 hours a week assisting their loved ones. It’s hard enough to take care of yourself and your loved ones at the best of times, but when your loved one has dementia, the extra stress can make it even more challenging to keep up with life’s demands.
You often feel disconnected from your life. You may have trouble sleeping or concentrating at doing daily activities. You may feel like you have no time for yourself anymore — no time to spend with your friends or family outside of your role as a caregiver and no time to do the things you love. Many studies have concluded that caregivers of people with dementia reported higher levels of stress than those who care for people with other health conditions — and this grew more with the COVID-19 pandemic. It is difficult for caregivers because they’re already trying to manage the physical and emotional demands of caring for someone with dementia—not to mention the financial and practical challenges that come along with it.
In addition to providing daily care and completing nursing duties, family caregivers spend a considerable amount of money on caregiving. It gives them much uncertainty and anxiety about how they will pay for Long-term Services and Supports (LTSS) for a family member whose self-care needs are increasing. In fact, in the US there are about 16 million unpaid caregivers. According to an AARP study, 78% of family caregivers incur out-of-pocket costs related to caregiving, amounting to 20% of their total income. This condition can be financially draining on a caregiver’s life.
Signs of Caregiver Burnout
It’s important to recognize the signs of caregiver burnout early on because they can quickly spiral into a situation where you cannot provide the care you need for yourself and your loved one with dementia. If you’re experiencing any of the following, it may be time to take a step back and evaluate how to take care of yourself as a caregiver:
- You are experiencing stress-related symptoms like headaches or muscle pain.
- You feel tired or exhausted all the time and lack energy.
- You are sleeping less than six hours per night or have difficulty sleeping.
- You are skipping meals or eating more junk food than usual.
- Your relationships suffer because you don’t have enough time for your friends or family.
- You have increased irritability, anger, or aggression towards the dementia patient.
- You feel depressed and isolated, which may lead to poor decision-making about your loved one’s care.
- You are less interested in daily activities.
- You have difficulty concentrating.
- You drink more than usual or abuse drugs (including prescription drugs).
- You suddenly lack motivation or enthusiasm for caring for your loved one.
Ways to Cope with Caregiver Stress
The demands of caregiving are overwhelming, especially if you’re juggling a job, raising children, or managing your health issues. To make matters worse, many dementia caregivers don’t realize that resources are available to help them cope. Dementia is not a hopeless cause. With patience, planning, and support, you can help your loved one live healthy — and reduce your stress in the process. If you’re a caregiver, it’s essential to understand that your struggles are normal. It is important to recognize that you are not alone and that there are ways to help alleviate your struggles.
- Make sure you’re getting enough rest.
- Ask for help from others when needed. Family and friends can help you weather the storm.
- Permit yourself to feel whatever emotions are coming up for you.
- Find a friend you can talk to and share your feelings.
- Set up a healthy routine for yourself. Prepare nutritious meals, drink plenty of water, and find time to exercise.
- Find someone to help fill in so you can take breaks and even a vacation from caregiving
- Provide the care you can, and don’t overdo yourself.
- Take a break if you must. Respite care is available in most communities, such as in-home respite and short-term nursing homes.
- Acknowledge your efforts.
- Join a support group with other dementia caregivers who understand what you’re going through.
Because you face many challenges as you care for your loved one with dementia, any support you can get is important. If you think you might be depressed or have thoughts about harming yourself or others, please seek medical attention immediately.
Being able to care for someone with dementia is a privilege — but only if you take care of yourself too! To ensure your well-being and ability to provide consistent care for your loved one, you should also prioritize yourself.
Here are some links to websites for caregiver support: