Living better at home with dementia or Alzheimer’s
Whether you’ve been diagnosed with some form of dementia or care for someone who has, it might feel like you’ve just gotten off the main highway and veered onto an unfamiliar road with no GPS service. Your life will change, but there is a lot you can do to prepare and "pack" for this trip so you’ll have what you need as you go.
You’re probably already experiencing a range of emotions. Relief that the diagnosis explains the symptoms you’ve noticed. Anger that your life is taking a different course from what you’d planned. Fear about how this will affect you and your family. These are all common feelings. Knowing that you don’t have to brave it alone and planning ahead can help ease the way.
What is dementia?
When memory loss and the decline of other mental abilities are severe enough to interfere with daily life, it is called dementia. Dementia, itself, isn’t a disease but rather a group of symptoms that affect mental tasks, like reasoning and memory. There are many causes of dementia. The most common is Alzheimer’s disease, which accounts for some 60–80% of dementia cases. As dementia symptoms increase, the person living with it will need more help.
Not all dementias are alike. While Alzheimer’s disease accounts for most cases, other diseases, disorders, and medical conditions can cause similar symptoms. Dementia can be caused by diseases like Huntington’s or Parkinson’s and from head injury or stroke. Unlike Alzheimer’s, certain forms of dementia can be reversed, so getting proper medical diagnosis and treatment is important.
What is Alzheimer’s?
In the early stages of the disease, a person with Alzheimer’s may ask the same questions over and over or have difficulty performing tasks they once did easily (like playing a card game or following a recipe). As the disease advances, the person with the disease may become disorientated and experience changes in mood and behavior with increasing confusion. For example, a person with Alzheimer’s might get lost in their own neighborhood, forget to pay the phone bill, become confused about how to use the phone, or stop doing activities that they once enjoyed. These sorts of changes are often the first sign of Alzheimer’s. Though there is no cure for Alzheimer’s yet, there are medications and treatments for its symptoms.
Common signs and symptoms of Alzheimer’s.
Memory loss, difficulty with executive function, such as planning or problem solving, confusion about time or place, and trouble completing familiar tasks are all common signs of dementia. Many people assume that these symptoms are a normal part of aging. They are not. This misperception can delay being diagnosed—and treated to slow the progression. If you have questions or concerns about your own behavior or a loved one’s, don’t wait to learn more. Make an appointment to see your doctor right away for an evaluation.
Not sure if you need Alzheimer’s or dementia care?
Do you know the 10 early signs and symptoms of Alzheimer’s? If they reflect your behavior or your loved one’s, see your doctor right away. Early detection and treatment makes a difference.
If you’ve been diagnosed with Alzheimer’s or dementia…
- Feel your emotions. You will experience a wide range of emotions when faced with an Alzheimer’s diagnosis. Anger that you can’t control the disease, denial of your diagnosis, sadness about the way your abilities are changing, fear of what it means for your future and your family’s. Acknowledge what you’re feeling and ask for help from your doctor to manage prolonged sadness or depression.
- Learn about dementia. 47.5 million people have dementia worldwide and there are 7.7 million new cases every year, so there is a wealth of information about the stages and treatments that can help. Consult your health care providers for information and referrals to helpful resources and empower yourself by learning as much as you can about coping with your symptoms.
- Consider your options. There are many ways to take charge of your situation. Let your family members know how you envision needing help in the future and work with them to plan for the next stage of your disease.
- Identify your support system. Surround yourself with a good team that includes family members who will honor your wishes and friends who will listen to your concerns. As the disease progresses, you will need the support of those who know and understand you. Talk to them about how they can help you plan for the future. Some of your most cherished allies may be people you have yet to meet—friends and professionals who have experience with helping other’s with Alzheimer’s.
- Document your wishes. Getting finances and legal documents in order is one of the most important steps you can take to feel in control. As difficult as it is to discuss your finances and end-of-life wishes, doing so is a gift to your family who may face uncertainty and questions about your care later. Naming another person to make decisions on your behalf when you are no longer able to can alleviate many worries for both you and your family. Being an active participant in your life plans and decisions rather than a passive passenger on this journey will bring you peace of mind.
- Stay engaged. Continue doing the activities you enjoy for as long as you are safely able. Take that family camping trip, continue swimming, and keep going to the farmer’s market with a friend. Even though you’re living with a diagnosis, you’re still you. Seek people and activities you love and find moments of joy in your day, even if you begin to need some help to do so.
- Accept help. Everyone wants to feel useful and needed. Your loved ones can’t know what exactly you’re experiencing, but they can drive you to an appointment or tack down the corner of the hallway carpet that’s come loose. Allowing others to assist you makes your loved ones feel useful. Letting them help with grocery shopping, errands, home repairs, and cooking doesn’t mean you’re helpless—it means you’re allowing others to make your life easier and safer and to show you they care. Let them do what they can.
If you’re caring for someone with dementia…
- Expect change. Caring for someone who has dementia or Alzheimer’s is a demanding, changing job. One moment your mom seems engaged in conversation and the next she looks scared and confused. Dad, who was always a trivia buff now can’t remember the article he read this morning. Moment to moment, day to day, nothing is as constant as change. It may be difficult to anticipate what kind of help your loved one will need, but being observant to changes will help you know how to adjust the care you’re giving.
- Build your care team. The role of a caregiver is not limited to spouses, partners, or close relatives. You’ll need—and want—a team of care partners. Many people build "families of choice," made up of friends, neighbors, and care professionals to help with care and support. Find others who will handle certain tasks (like shampooing your mom’s hair or mowing the lawn), be supportive listeners, and share information from their own experiences.
- Be easy on yourself. Caregiving is demanding, both physically and emotionally. Remember to pay attention to your own well-being along the way. You may feel like you have to do everything. But you need rest and time to yourself too. Respite care allows you to take a deep breath and enjoy activities that help you relax and recharge—and ultimately benefit your loved ones too. Sometimes, just knowing you have a experienced, reliable care professional to step in when there’s a last-minute schedule change can relieve anxiety.
Caregiving is demanding — and it’s normal to need a break. Seeking help does not make you a failure. Remember that respite services benefit the person with dementia as well as the caregiver.
- Make your home safe. You’re used to your home the way it is, but when a person in the home has dementia, you need to look at your home in new ways. The person may forget what the knobs on the stove are for and turn on the gas, or forget that they’ve already taken their morning dose of medication. There are quick fixes to these potential dangers (locking devices on stoves, and storing away medications). It can be helpful to have a friend with experience or a care professional with a fresh set of eyes help you assess potential dangers in your home and fix them right away.
- Plan for the future. When a loved one is diagnosed with Alzheimer’s, it’s important to start getting their health, legal, and financial affairs in order. As much as possible, you’ll want them to be involved in planning for their future. Encourage your loved one to express their wishes while they can still make decisions. Be sure to review all pertinent health, legal, and financial information—living wills, powers of attorney for finances and health care, trusts, and Do Not Resuscitate (DNR) forms—to make sure their wishes are reflected.
Alzheimer’s and dementia facts
- Every 66 seconds, someone in the United States develops Alzheimer’s Disease.
- Alzheimer’s, the most common type of dementia, makes up between 60 and 80% of all dementia cases.
- Alzheimer’s takes a devastating toll on family caregivers. Nearly 60% of Alzheimer’s and dementia caregivers rate their emotional stress as high or very high. About 40% suffer from depression.
- Late-stage care decisions can be some of the hardest families face. Connect with caregivers who have been through the same process.
- Dementia is one of the major causes of disability and dependency among older people worldwide.
- Dementia has physical, psychological, social and economical impact on caregivers, families and society. Respite care can support you as a caregiver.
- Early stage refers to people, irrespective of age, who are diagnosed with Alzheimer’s disease or related disorder, and are in the beginning stage of the disease. The early stage of Alzheimer’s can last for years.
- To learn more about Alzheimer’s, you’ll find a wealth of information, local resources, and support groups at www.alz.org.
- Need to speak with an expert right now? Call the Alzheimer’s Association 24/7 Helpline at (877) 777‑5116. For people with memory loss and caregivers, you can get reliable information and support at any time day or night.
- To find information on Alzheimer’s research, care and treatment or to locate resources and support in your area, visit the Alzheimer’s Association website.
- For information and inspiration from families on the frontlines, explore these blogs about Alzheimer’s.
- Worried that it’s time to take the car keys away but not sure what to say or do next? Visit the Dementia & Driving resource center for tips.
- Looking for a forgetfulness-friendly social environment where you and your loved one can spend time with others? Explore the Memory Café movement and find a social group near you.
This information is for educational purposes and is not a substitute for the advice of a medical professional.
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