A Family Caregiver’s Guide to Early-Stage Alzheimer’s Disease
(Can be used for understanding other types of dementia as well)
Understanding Early-Stage Alzheimer’s Disease (FAST Stage 3)
Alzheimer’s disease (AD) and related disorders such as vascular dementia, Lewy body disease, and frontotemporal dementia are progressive illnesses with symptoms that evolve as the disease progresses. There is also a condition called mild cognitive impairment (MCI), FAST stage 1-2, which is diagnosed when some symptoms have occurred but before Alzheimer’s disease symptoms are fully present.
While each person’s journey through Alzheimer’s is unique, most people experience some common symptoms in a similar progression. Understanding these common Alzheimer’s symptoms can be helpful in terms of helping your loved one cope with the changes on a day-to-day basis and helping you plan for caregiving needs.
Noticing Changes
In early-stage illness, there are some patients who have complete insight into the emerging changes. In other patients, they are unaware, and family members or others first identify the changes. An early diagnosis can help people receive treatment for symptoms and gain access to support to assist them in living with AD.
Slowing Progression
While it remains incurable, we now understand some lifestyle strategies that can slow progression of AD. Two FDA-approved medications provide some degree of disease slowing, and advances in clinical trials research are starting to yield new treatments. For many, these advances add to their overall quality of life.
Symptoms in MCI and Early-Stage AD
Individuals with MCI will have some complaints of occasional changes in ability but will not have significant decline in function overall. When significant functional decline is evident then progression to early-stage Alzheimer’s disease has occurred. (Realize however that a person recently diagnosed is not necessarily in the early stage of Alzheimer’s disease as some individuals are further advanced at the time of the diagnosis.) For those in the early stage of the disease symptoms are more regularly present but most people can continue to function independently with simple daily routines. It is important to note that not everyone will experience all Alzheimer’s symptoms.
Typically, there is an awareness of the changes that are occurring, including difficulty with:
Memory Symptoms
Recalling recent events such as appointments or conversations
Executive Function/Planning/Concentration
Making decisions and judgments, especially with limited time such as in response to an emergency
Managing routine chores
Handling tasks such as balancing a checkbook or taking medications as prescribed
Communication
Expressing thoughts and feelings due to difficulty finding the right word or difficulty writing letters or emails
Processing what was said by others and understanding what has been read
Emotional
Behavior and mood changes including loss of interest in favorite activities and socializing, new onset of or increase in feelings of anxiety and depression
Becoming a Family Caregiver
Few family caregivers expected to take on the role. Even fewer prepare ahead of time or learn caregiving skills just in case. So, when it happens, there can be a range of emotions felt. If the role comes with a diagnosis of an incurable and challenging disease like Alzheimer’s disease, there can be additional worries added.
When a loved one gets a diagnosis of Alzheimer’s disease family caregivers may experience a range of emotions that vary in intensity, including:
A sense of relief knowing what is wrong
Denial
Depression
Anger – why would this happen to my loved one? To me? Loss of independence due to added caregiving responsibilities
Anxiety and fear: How and/or what do I tell my family/friends? Difficulty assessing your loved one’s capacity to manage things such as finances or personal care
Isolation and loneliness, due to changes in the intimate relationship
Embarrassment and shame; Feeling misunderstood by friends and family, which may lead to isolation
Feelings of loss
Acknowledge your feelings and allow yourself time to adjust to this new normal. Reach out for support. Caregiving for a loved one with AD is not easy, but there is help in this journey. The more you reach out to others and get support, the more you will be able to cope with your loved one’s Alzheimer’s symptoms while continuing to enrich and find meaning for you and your loved one.
Educate yourself. Understanding what to expect will help you plan for care and transitions. Knowledge will help you both honor a loved one’s strengths and capabilities throughout each stage, and make sure you have the strength and resources to continue.
Get help. Don’t take on the caregiving journey alone. Despite your dedication, at some point you will need some help in caregiving. No one can be awake and alert 24 hours a day. You have your own health and other obligations to consider. Caregiving support is critical.
Be healthy. Focus on the four pillars of brain health for yourself. Engage in physical exercise, eat a balanced diet, manage your stress, and exercise your brain.
Helping Your Loved One After the Diagnosis of Alzheimer’s Disease
At the time of diagnosis individuals in the early stages of Alzheimer’s disease may experience:
A sense of relief knowing what is wrong
Denial
Depression
Anger – why would this happen to me?
Anxiety and fear – worry about a loss of independence, will I be a burden to my family? How do I tell my family/friends?
Isolation and loneliness,
Embarrassment and shame
Feelings of loss
Feelings of people trying to help too much or too little
Role changes in relationships with family and friends
Increased or decreased desire for intimacy
Feelings of not being understood by others
Problems trusting decisions
Family and friends withdrawing or avoiding
Difficulty interacting in social settings
Increased anxiety over legal and financial issues
Acknowledge your loved one’s feelings and take time to adjust to this new normal. Reach out for support for both yourself and your loved one. The more you reach out to others and get support, the more you will be able to cope with Alzheimer’s symptoms while continuing to enrich and find meaning in your life.
Your Role as Advocate for Your Loved One
Encourage your loved one to stay involved in discussions about day-to-day issues as well as more complicated issues like the diagnosis and planning for the future. Many loved ones with early-stage Alzheimer’s want to make their wishes known. Talk with your loved one and let them express what is important to them.
While detailed planning for the future is emotionally difficult, it is vital that you and your loved one make some key decisions about the future:
Who do they trust to make decisions for them when they are no longer able to do so?
Who do they trust to manage finances?
Please talk with your own healthcare provider before using any of this information.
