8 Tips for an Alzheimer’s Caregiver
Being responsible for the care of someone with Alzheimer’s disease or dementia may be one of the most difficult tasks a person can choose to undertake. Making the decision to care for another person’s needs and well-being over their own is the ultimate selfless act. In doing so, the caregiver’s own life and needs are often put on hold as they face the daily challenges of this monumental task.
With limited medical therapies available in the treatment of Alzheimer’s, the support one provides as a caregiver is vitally important and can make a huge impact on an individual’s quality of life. If you are a new or veteran caregiver, thank you for the work you do. Continue reading to learn more about what you can do to make the journey a little easier as you provide such an incredible gift.
Keep Your Mental and Physical Health a Priority
First and foremost, you must make time to take care of yourself. In fact, the first six tips in this list all point to things you should do in order to accomplish self-care.
As the care recipient’s physical, cognitive and functional capabilities diminish and their need for care increases over time (sometimes years), it can be easy to become tired and feel overwhelmed, leading you to forget about your own needs, health and well-being. Caregiving for someone with Alzheimer’s can easily become an all-consuming task.
The Alzheimer’s Association shares the following statistics concerning those who provide care to Alzheimer’s and dementia patients:
- Almost 75% have concerns about their ability to maintain their own health
- One-third report their health has deteriorated due to their caregiving responsibilities
- Almost one-fourth also provide care to a child or grandchild — they are sandwiched between often conflicting care responsibilities
- 40% experience high levels of stress, depression and burnout
Taking care of yourself will require you to develop your own personal support plan — before you need it. When you are deeply enmeshed in diligently providing for someone else’s needs, it can be easy to neglect your own. However, when you don’t care for yourself, you can’t provide the best level of care and attention for your care recipient either; then you both suffer.
Ask for and Accept Help and Assistance
Reach out to others (friends, family and volunteer organizations) to help with your caregiving responsibilities before you become overwhelmed. Don’t wait until you’re desperate. Accept any help that is offered. This Mayo Clinic article, Alzheimer’s Caregiving: How to Ask for Help may be beneficial.
Join a Support Group
Support groups help you to feel “not so alone” as you connect with others who face the same struggles and difficulties. Support groups help combat feelings of fear, hopelessness and isolation. Online support groups make it possible for everyone to avail themselves of this valuable resource, even those who feel that they cannot get away.
- Take Breaks from Your Caregiving Responsibilities
Taking regular breaks from your caregiving responsibilities — from a few hours weekly to full weeks of vacation — will make you a better caregiver and often allows you to garner more satisfaction in your role as a caregiver. Breaks provide time to revitalize and refresh yourself and your outlook on life. It’s important to take time to pursue interests and hobbies and to maintain friendships, professional networks and social contacts. It’s important to do things that bring you joy, satisfaction and peace on a regular basis. Respite care is an invaluable tool every caregiver should have in their toolbox.
Maintain Your Health
Find time to work out several times a week. Not only is this good for your body, but it’s also a great way to relieve stress. Be sure to see your doctor for regular checkups. Don’t ignore any warning signs or symptoms, especially those that relate to excess stress. Seek help immediately if you begin to experience any signs or symptoms of depression. These may include:
- Feelings of sadness, emptiness or anxiety that does not get better or go away
- Feelings of helplessness, worthlessness or guilt
- A change in sleep patterns
- Experiencing less interest or a loss of interest in activities you typically enjoy
- Feelings of hopelessness
- Feeling irritable, restless or more cranky than normal
- Changes in appetite, weight gain or weight loss
- Having less energy, feeling extremely tired or being easily overwhelmed by daily tasks and routines
- Having trouble concentrating or focusing which make simple things like reading or watching TV difficult
- Experiencing difficulties or feeling overwhelmed when having to make a decision, big or small
- Physical symptoms such as chest pain, headaches, upset stomach, cramps or digestive problems
Each person experiences depression differently. Not all people will experience every symptom. If you are experiencing several from this list, speak to your doctor. If you are having any thoughts of suicide, contact the suicide hotline and see your doctor today! Remember, your health matters too.
Manage Stress Levels
Being a care provider for someone with Alzheimer’s or dementia is one of the most stressful things you may ever undertake. As a caregiver, you’ll experience the need to problem solve, practice extreme patience and make big decisions, almost daily; so, it’s important for you to find ways to manage stress that allows your mind and body to relax. The following activities are ideal for stress relief and promote physical and mental health:
- Tai Chi
- Being Outdoors
Other activities, such as rhythmic exercise, meditation and deep breathing, are also great ways to help your body naturally combat stress, boost mood and raise energy levels.
Become Knowledgeable About Caregiver Stress and Burnout
When a person becomes a caregiver for someone with Alzheimer’s, they are making a commitment for a long period of time. Unlike most terminal diagnoses, Alzheimer’s is more like a marathon rather than a sprint. Years of caregiving responsibilities have a way of wearing down even the most resilient and strong individual. Watching another person that you care about gradually become a shell of who they once were can be overwhelming and exhausting. It’s important to know the signs of caregiver stress and burnout and to be on the watch for them. If you experience any of these warning signs and symptoms of caregiver burnout, seek professional help immediately:
- Depression that is debilitating
- Excessive tension and stress
- Intense or extreme anger or irritability towards the care recipient
- Constant feelings of anger, anxiety or guilt
- Social isolation and relationship conflicts
- Having an overall increased dissatisfaction with life
- Excessive use of alcohol, drugs or medications
- Having a lowered immunity and increased need for healthcare services
Burnout can seriously damage your health and affect your ability to be an effective caregiver; therefore, it’s important to address it before it begins to have serious consequences.
What can you do to cope with stress and burnout?
It’s important to carve out time for your own self-care.
- Take advantage of respite care frequently and regularly
- Exercise regularly; even several 10-minute sessions scattered through the day is beneficial
- Talk to a trusted person about your feelings and what you are going through
- Find time to enjoy yourself daily. Even something as simple as playing with a pet is important.
- Find time for humor. Humor is a well-known antidote to boredom, illness, sadness and stress. Watch your favorite sitcom. Laugh at yourself and the absurdities you encounter every day. Surround yourself with laughter and reasons to feel good.
- Try something new. It’ll distract you as well as help you to flex your mental muscle and relieve stress.
Give Yourself Permission to Grieve and Feel “Bad” Emotions
As you watch a family member or friend slowly lose memories and skills, and as you watch their personalities change into someone you no longer know, you may experience a series of grief-like stages. As time goes on, their need for care and assistance increases. At the same time, their ability to show how much they appreciate your hard work and effort will diminish. At times, caregiving may literally feel like a thankless job.
Give yourself permission to feel sadness and grief, as well as anger and confusion. Each person’s journey will be unique and, therefore, can’t have a prescribed time and place to grieve.
Becoming a caregiver does not come with an instruction manual; however, there are many workshops, books and online training resources that can help you learn the skills you need to be successful.
Learn all you can about Alzheimer’s disease. Take time to learn as much as possible about the Alzheimer’s disease process and what you can expect in the journey ahead. Learn all you can about the symptoms and stages of Alzheimer’s, ways to manage behaviors related to the disease process and treatment options. The more you know, the easier it’ll be to foster reasonable expectations, prepare for challenges and reduce frustrations. Educating yourself early in the process will make it possible to involve the Alzheimer’s patient in decision-making processes, as well, by finding out what they want while they’re still cognizant enough to make choices and decisions — legal, financial and medical.
The Alzheimer’s Association provides a useful guide for caregivers to reference for support during each stage of the Alzheimer’s process, including the below:
- Early-Stage Caregiving — Symptoms experienced during the early-stage of Alzheimer’s and dementia are mild and the main role of the caregiver is support
- Middle-Stage Caregiving — As the care recipient moves into the middle stages of Alzheimer’s and dementia, they will require a greater level of care
- Late-Stage Caregiving — The last stages of Alzheimer’s disease demands intensive care. During this stage, the care provider’s focus should be on preserving the care recipient’s dignity and maintaining their quality of life.
- Memory Loss and Confusion — Learning the proper response to memory loss and confusion will go a long way towards making both of your lives less stressful and having fewer outbursts of anger and agitation
- Wandering — Wandering, a common behavior for the Alzheimer’s patient, can be dangerous; therefore, it’s important to learn about strategies and services that can help to prevent this behavior
- Repetition — When a person with Alzheimer’s repeats information, they are most likely looking for familiarity, security and comfort. Learn what you can do to provide these things.
- Sleep Issues and Sundowning — Sundowning and sleep disturbances are caused by Alzheimer’s-induced changes in the brain. Learn coping strategies to deal with these issues.
- Aggression and Anger — Learning what to do when the care recipient experiences aggression and anger, which can happen suddenly and for no apparent reason, is an important tool to have in your caregiver toolbox
- Anxiety and Agitation — Learning the triggers of anxiety and agitation and knowing the proper way to respond to these behaviors is another important tool
- Depression — The care recipient may feel depression; however, because dementia and depression can manifest similar symptoms, the depression can be harder to diagnose
- Suspicions and Delusions — Suspicions and delusions may happen when the care recipient moves into the middle- to late-stage of Alzheimer’s. Learn what you can do to deal with their firmly held beliefs of things that are not real or true.
- Hallucinations — Hallucinations can be frightening for both of you; therefore, knowing how to respond to them when and if they occur can be very important
- Changes to Your Relationship — Alzheimer’s disease will force the relationship between caregiver and care recipient to change
These articles touch on just a few of the topics you’ll benefit from learning more about as you prepare for the journey ahead. Learning all you can about these topics and many others may help deflect problems and issues before they blossom into even bigger problems. Behavior modification (knowing what to do to prevent behaviors or how to respond to certain behaviors) is an important topic to become knowledgeable about as you learn all you can about ways to make both of your lives better.
Many online sites provide beneficial resources. Some include:
- Local Alzheimer’s Association Chapters
- Family Caregiver Alliance’s Family Care Navigator
- Creating a caregiver action plan
- Harvard Medical School’s Alzheimer’s Disease Special Health Report (there is a cost)
- National Institute on Aging’s articles covering different aspects of dementia
Respite Care at The Brielle
The Brielle at Seaview, located in Staten Island, New York, offers respite care, making it easier for a caregiver to take a necessary break from their caregiving responsibilities. Our Short Stay Program provides comfort, care and engagement to the care recipient giving you, the care provider, time for yourself. The program is also a great way to test drive our community and can be used to ease the care recipient into life in our memory care community. Feel free to contact us to learn more.