After the Diagnosis: A Guide for Family Caregivers
Get a complete diagnosis as early as possible
A good evaluation includes physical, cognitive, and laboratory testing, as well as obtaining a detailed description of the cognitive changes that the patient and/or family have observed. If possible, get a diagnosis that goes beyond “dementia” and identifies the underlying disease process. This will help everyone better understand symptoms, treatments, and the expected course of the illness. Ask for more information if you left the diagnosis appointment confused or uncertain.
Because many conditions can cause cognitive changes, and some of these may be treatable, it is important to get assessed as early as possible. Treatments to potentially delay the progression of Alzheimer’s disease symptoms are most effective when started early in the disease process. An early diagnosis also allows the person living with the diagnosis to take a more active role in legal and financial planning decisions, learn coping strategies, and choose how to prioritize the time remaining before symptoms worsen.
Take care of your emotional needs
It is normal for caregivers to have many different feelings and thoughts after their loved one receives a diagnosis of dementia. Shock, sadness, anger, relief, fear, guilt, grief—these are all typical responses. Instead of strong emotions, some people feel physical sensations such as fatigue or pain. These reactions are normal, and it is important to acknowledge them. Give yourself space and time to experience your feelings. Write in a journal. As your loved one permits, talk to others, including professionals like counselors or clergy, about what you are going through.
Educate yourself and others
Education is important because Alzheimer’s and other dementia-causing diseases bring new and unfamiliar challenges and issues for families. Learning about the disease can help you know what to expect over the course of the illness and how to manage it. Education can help alleviate the stress of the unknown, provide the chance to make informed decisions, and better prepare everyone for the future. You can learn effective caregiving skills and techniques to provide a better quality of life for your loved one at all stages of the disease.
Trying to do it all yourself can exhaust you, affect your health, and reduce your effectiveness as a caregiver. Support from others can be an enormous help. Be open to asking for help from your friends, family, neighbors, faith community, etc. It is important to stay connected to those people who make up your circle of support. Identify and use community services. Caregivers often benefit from joining a support group.
Make plans for health care, finances, and long-term care
It is important to plan early when the person with dementia can still be actively involved in making decisions for the future. Putting a plan in place is critical as needs change or in case of a crisis. You may wish to hold a family meeting involving as many family members and loved ones as possible. Shared planning allows the family to know the wishes of the person living with the diagnosis, which may lessen confusion or disagreements when plans must be implemented.
Legal and financial planning should begin as soon as possible. This includes putting in place documents that authorize another person to make health care and financial decisions as well as developing financial plans for long-term care coverage. For instance:
Encourage the person with the diagnosis to complete or revisit their health care advance directives—the Power of Attorney for Health Care (POA-HC) and Living Will. Complete your own POA-HC if you don’t have one; if you do have one, review your current agent designations.
Encourage your loved one to complete a will, a living trust, and a Power of Attorney for Finances and Property. The Power of Attorney appoints an agent to handle financial matters.
Talk with staff at the county Aging and Disability Resource Center (ADRC) for information on home care, respite care, and long-term care options and financing.
Consult an attorney with experience in elder law to determine what other things you need to consider for your particular circumstances.
Consider safety issues
Determine if the person living with dementia should continue to drive and, if not, take necessary actions to prevent it. Seek out a home safety evaluation (the cost may be covered with a physician’s order). The evaluation will alert you to fall hazards, fire issues, and inadequate lighting. Monitor medication compliance and talk to a pharmacist about medication reminders or automated pill dispensing systems. Be attentive to potential financial errors or exploitation.
Make adjustments to support the person with dementia
Setting up routines and structuring the day can decrease confusion and promote success. Make adaptations as needed to accommodate changing needs and to provide a safe and supportive environment. Connect the person to his/her environment through enjoyable involvement and activities that structure time and make the best of retained and existing abilities. You can continue to enjoy time together and share special moments!
People with dementia may find it increasingly difficult to express themselves in words and have trouble understanding what has been said. But the need for communication continues to be important as the disease progresses. Adjust your ways of communicating and try new approaches to listening and speaking.
Use available services and financial assistance
Caregivers find many types of local services critical to keeping their loved ones safe and at home. These include in-home respite and companion care, home health and personal care services such as bathing assistance, and home maintenance services such as cleaning or yard work. Adult day programs provide both an enriching experience for loved ones and respite for caregivers. Sources of financial assistance for these services may include Social Security Disability Insurance (SSDI), for those under age 65; the Alzheimer’s Family and Caregiver Support Program (AFCSP) and the National Family Caregiver Support Program (NFCSP) for respite support; long-term care programs; Medical Assistance (MA), also called Medicaid; and Veteran benefits through the VA.
Learn about facility care
Choosing facility care is never an easy decision for families. Yet, there may come a time when the person living with dementia needs a more structured and supportive setting. Thinking about this now can be helpful. Some facilities have dementia-specific “memory care” units to provide specialized programming and care for persons with dementia. Many facilities have waitlists. Consult ADAW staff for more information on considerations for facility placement. You may find our handouts and family education program helpful when evaluating facilities. Support group members who have been through the placement process can offer invaluable experience and insight.
Take care of yourself and manage your stress level
To be an effective caregiver, you need to maintain your own health and well-being. It’s easy—and dangerous—for caregivers to devote themselves totally to caregiving and neglect their own needs. Taking care of yourself includes getting adequate sleep and exercise, choosing a healthy diet, and maintaining friendships, interests, and hobbies.
Stress can manifest itself physically (e.g., blurred vision, digestive problems, high blood pressure), emotionally (e.g., guilt, depression, anxiety, frustration, loss of self-esteem), and behaviorally (e.g., irritability, poor concentration, loss of appetite). Be alert to your own stress symptoms and remember that depression and anxiety are common among caregivers. If painful feelings, nagging thoughts, or physical symptoms last for weeks, and especially if they affect your day-to-day functioning, see your health care provider.
After the Diagnosis: A Guide for Persons Living
Take care of your emotional needs
It is normal to have many different feelings and thoughts after receiving a dementia diagnosis. Shock, sadness, anger, guilt, relief, fear, grief—you may feel these and other emotions. Some people feel physical sensations such as fatigue or pain. All these reactions are normal, and it is important to acknowledge them. We suggest that you give yourself space and time to experience your feelings. Talk to loved ones, a counselor, or a clergy member. Write in a journal. Join a support group. Depression and anxiety are common among those with a diagnosis. If painful feelings, nagging thoughts, or physical symptoms last for weeks, and especially if they affect your day-to-day functioning, see your health care provider.
Recognize that you are not alone and still have a purpose
Connect with support groups of others who are coping with the same diagnosis. ADAW offers a weekly cognitive enhancement group called “Meeting of Minds,” monthly “Memory Cafés” for persons with a diagnosis and their care partners, and small peer groups that meet regularly for conversation and support. These can improve your mood and help remind you that you are not alone. Our agency and others depend on you for your advice, wisdom, and direction. You still have purpose and can live a healthy, active, and meaningful life with dementia.
The dementia journey takes a team effort. Decide who to tell about your diagnosis, keeping in mind that some family and friends will handle this better than others. Call a family meeting or a gathering of close friends to get advice and make plans. Now is the time to start practicing the skills of asking for and accepting help from others—whether family, friends, neighbors or your faith community. Follow up on referrals to agencies and services for help with routine tasks such as cooking, paying bills, transportation, shopping, or yard work.
Learn more about your diagnosis
Your health care providers will want to partner with you to manage your health, so it will help them if you know about your condition. Getting more information is especially important if you left your diagnosis appointment confused or uncertain. Meet with your health care provider or the professional who diagnosed the disease. Try to bring someone with you for support and as “another pair of ears.” If needed, ask your provider to review the tests you took and your results. Get information about your specific disease, its progression, and possible medications. Ask if they will manage your care going forward, or if you should see someone else.
Get regular health check ups
Your primary health care provider is a critical member of your care team and you should see them regularly for health check-ups. If possible, always bring someone with you to your appointments. Talk to your provider about monitoring and controlling those health conditions—such as high blood pressure or diabetes—that can affect thinking and memory. Tell your provider about all medications you are taking—some over-the-counter medications can make memory problems worse. Report any change in symptoms.
Make plans for health care, finances, and long-term care
Complete or revisit your health care advance directives—your Power of Attorney for Health Care (POA-HC) and your Living Will. The POA-HC indicates who will make your health care decisions when you no longer can. The Living Will details your wishes at end of life. Get assistance with these documents through your health care organization or an attorney.
Advance directives for financial and estate management include a will, a living trust, and a Power of Attorney for Finances. If possible, find an attorney who specializes in legal work with older adults (sometimes referred to as an elder law attorney) or with adults with disabilities.
Meet with staff of the ADRC or other aging agencies to discuss the financing of long-term care, including home care, senior housing, assisted living, and nursing care facility placement.
Watch out for your safety
Dementia can affect attention, memory, judgment, reaction time, wayfinding, and vision. Ask your doctor whether you should continue to drive. You may wish to get a driving evaluation or pick a trusted family member or friend to give you honest feedback on your driving. Seek out a home safety evaluation (the cost may be covered with a physician’s order). The evaluation will alert you to fall hazards, fire issues, and inadequate lighting. Ask someone to monitor your medication compliance and talk to a pharmacist about medication reminders or automated pill dispensing systems. Set up trusted supports to protect you from financial errors or exploitation.
Choose a healthy lifestyle
Research suggests that a healthy, active lifestyle may slow the symptoms of dementia. Studies have confirmed the benefits of aerobic exercise, good nutrition (a Mediterranean-style diet), challenging mental activity, regular social contact, adequate sleep, and reduced stress. Experts often recommend that persons with dementia stop using tobacco and reduce or stop using alcohol. See your provider for advice on the most important lifestyle changes for you.
Consider participating in clinical trials
Talk to your doctor about dementia trials or studies. You may wish to contact the Wisconsin Alzheimer’s Disease Research Center, located in Madison, Wisconsin. Connecting with dementia researchers can give you access to the newest research results and treatments. It can also allow you to positively affect the lives of many others, including future generations.
Stay connected and active
Social connections and meaningful activities are good for your brain health, protect against depression, and offer hope and meaning. As much as you can, maintain employment or volunteering, a regular social calendar, creative activities, pleasurable pursuits, and spiritual practices. Some people use this time to act on life-long dreams or to complete unfinished business. Others advocate for dementia research, dementia-friendly communities, or better dementia care. Whatever you choose, tap into your deepest dreams, values, and passions.