Being a Caregiver to Someone with Dementia

Dementia & Its Symptoms

Dementia is not a specific disease, but a general term for a decline in mental ability. It describes a range of symptoms that are associated with a severe decline in memory or other thinking skills that reduces a person’s ability to perform everyday activities. Someone with dementia may have problems with short term memory, keeping track of a purse or wallet, paying bills, planning or preparing meals, remembering appointments, or traveling out of the neighborhood. Some people have a specific form of dementia called Alzheimer’s Disease that affects the body as well as the mind.

Tips for Caregivers

Many dementias are progressive, so symptoms start out slowly and gradually get worse over time. Learning that someone you care about has just been diagnosed with dementia can be life changing. While many families provide care at home for a person with dementia, studies have shown that this can be more stressful than caring for someone with a physical impairment. A caregiver, now referred to as a care partner, can be a spouse, partner, adult child, relative (siblings, aunts, nieces, grandchildren), friend, or neighbor.

Let the doctor caring for your loved one know that you are the primary caregiver and need to be informed about your loved one’s condition and the treatments prescribed. Take advantage of resources and assistance that is available to make your job easier. Learn behavior management techniques to deal with irrational behavior and seek help in addressing legal and financial matters.

It can be overwhelming to take care of a loved one with dementia, but too much stress is harmful for both of you. Support and assistance are going to be very important throughout the months or years you are a care partner. Be sure to give yourself a break both physically and emotionally from caregiving demands. Help from friends, other family members, or community agencies is invaluable so that you can continue to provide your loved one with good care without becoming exhausted, frustrated, or simply burned out. It’s important to keep time for yourself to relax and enjoy hobbies.

Preparing for the Stages of Dementia

The Early Stage of Dementia

In the early stages of dementia, you may notice normal forgetfulness associated with aging, like forgetting names and where the keys were left. This will progress to difficulty concentrating, decreased memory of recent events, and difficulties managing finances and/or traveling alone to new locations. As symptoms start to appear more noticeably in this early stage, your loved one can still remain independent and should be able to do most things with a little help.

It’s important to safety proof the home. Installing grab bars and a shower seat in the bathroom is a good start. Remove throw rugs and install nightlights in the bedroom, bathroom and hallway to help reduce the risk of falls at night. Consider using a lockable pill organizer to remind your loved one to take his or her pills at the right time. Another helpful aid is a picture phone that lets your loved one press your photo to contact you instead of needing to remember the right number to dial. Ten spots mean you can include any siblings, grown children, or friends who need to be contacted easily.

The Mid Stage of Dementia

Memory loss is very noticeable during this stage and may include significant ongoing memory problems, like not remembering their address or phone number. They may not know what time of day it is and will most likely need assistance to complete their daily activities like dressing, bathing, or preparing a meal. Clocks are an important device to help keep track of dates and times. There are some clocks that provide the time, date, and whether it’s morning, afternoon, evening or nighttime. Large print wall calendars can help your loved one keep track of dates, appointments and special occasions.

Towards the end of this stage your loved one may start to forget names of close family members and have little memory of recent events. The ability to speak starts to decline and personality changes, such as delusions, compulsions, anxiety, and agitation may occur. It’s important to note that many people with mid-stage dementia still lead productive and purposeful lives. There are lots of stimulating and meaningful activities they can still enjoy. Try to focus on what they can still do, rather than what they can’t.

The Late Stage of Dementia

People in this stage need round the clock care. They have essentially no ability to speak or communicate and no longer recognize you or any of their nearest and dearest. They require assistance with most daily activities, including dressing, using the toilet, and eating. At this point, people with dementia often lose the ability to mentally process how to walk or even sit in a chair. This final stage of dementia can be incredibly difficult for family and friends, so it’s important to be realistic about what you can and can’t cope with. Be sure to accept any help that you’re offered and not to neglect your own health or needs.

Caregivers, It’s Important to Remember...

It is important to keep in mind that everyone’s journey is unique and these signs and symptoms are only meant as a guide. Remember that you are not alone. Get support from other people who are going through a similar experience, either by joining a support group, going online, and talking to someone in your community. It’s important to consider what will work best for your family. Don’t feel guilty if you decide to place your loved one in an assisted living facility or memory care facility. You need to decide where they will receive the best care and it might not be at home.

Pay Attention to Your Emotions Too

Caring for a loved one can bring on a number of feelings and emotional reactions. You may feel frustrated or burnt out. You may be angry and wonder..."Why me?” You may feel guilty for thinking about yourself instead of the person you are caring for. These are all very common feelings and you shouldn’t be ashamed about how you feel. However, if you don’t learn to deal with these emotions, they can affect your wellbeing and the wellbeing of the person you are caring for.

Here are some tips for coping with your feelings:

• Anxiety: Feeling stressed out, edgy or overwhelmed
• Prepare yourself as a caregiver by reading books or researching on the internet.
• Make a list of things you are worried about and try to come up with steps to reduce your anxiety.
• Take some slow deep breaths and distract yourself from your anxious thoughts.
• Sadness/Depression: Feeling down in the dumps, frequent crying and tearfulness, loss of interest or pleasure in usual activities
• Talk about your feelings with a close friend, family member, mental health professional, or support group.
• Take a break and focus your attention on something else.
• Try to make some positive changes in your life which will make you feel better.
• Anger/Frustration: Feeling easily annoyed or irritable, powerless to change the situation, or helpless
• Don’t let anger get bottled up. Express your feelings in a calm constructive way as you experience them.
• Consider your expectations of the other person or the situation to see if they are realistic. If not, try to change your expectations so that you will not be so easily angered or disappointed.
• Grief: Feeling sad about changes in the person you love and your relationship with them or disappointed about lost hopes, dreams, and plans for the future
• Allow yourself to grieve for changes in your life and plans for the future.
• Know that feelings of grief and loss are normal and given time the acute pain will subside.
• Take control of the situation by transforming your expectations and making a new plan for the future based on the positive things you have in your life.
• Guilt: Feeling like you are not doing enough for your loved one, you should not enjoy yourself because they are unable to, or that friends or other family members have been neglected due to caregiving
• Know that it is okay and necessary for you to take some time for yourself and ask someone to step in to help.
• Don’t let your loved one make you feel bad about leaving. Having some time apart can make each of you feel a little more independent.
• Remember that as long as your loved one has proper supervision, your absence will not put them at risk.

If it seems as though any of these feelings are reaching a crisis point it is important for you to seek professional help or support. Taking time to exercise will also help to relieve your tension and clear your mind.

Medical Disclaimer: The information provided on this site, including text, graphics, images and other material, are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other healthcare professional with any questions or concerns you may have regarding your condition.