Alzheimer's Early Stage Care
In the early stage of Alzheimer's, most people function independently. He or she may still drive, take part in social activities, volunteer and even work. Your role as care partner is an important one: to provide support and companionship, and help plan for the future.
"Early stage" refers to people, irrespective of age, who are diagnosed with Alzheimer’s disease or a related disorder, and are in the beginning stage of the disease. The early stage of Alzheimer’s can last for years. A diagnosis of early stage Alzheimer’s disease doesn’t just affect those with the disease; it affects everyone who loves and cares about them.
Your role as a care partner.
As a care partner (a term many choose to use rather than “caregiver,” since a person in the early stage of dementia may not need much assistance), you may find yourself in a new and unfamiliar role. You may be unsure of where to go for information, anxious about what to expect as the disease progresses and concerned about your ability to support the person living with dementia.
These questions and feelings are normal.
With an early diagnosis, you and the person with dementia now have the opportunity to make decisions about the future together, including legal, financial, and long-term care planning. The person living with dementia can take advantage of available treatments, participation in clinical trials and you both can benefit from local resources and support services. Being able to take advantage of all these benefits can reduce anxiety about the unknown and lead to better outcomes for everyone involved.
The role of a care partner is not limited to spouses, partners or close family members. Care partners may include "families of choice" such as friends, neighbors or long-distance relatives. If you are providing support as a secondary or remote care partner, it may be difficult to determine the exact level of assistance needed without direct observation. Whenever possible, try to connect with others in the support network to share insights or make plans to meet the person with dementia in their own environment.
Secondary care partners
One of the greatest challenges care partners face is not knowing how much assistance to give or when to give it because the person with early-stage dementia is primarily independent with dressing, bathing, walking and may still drive, volunteer or work. The most difficult tasks may involve managing a daily schedule or household budget.
As a care partner, your support with these everyday tasks can help the person with dementia develop new coping strategies that will help to maximize his or her independence. Every relationship is different, but finding balance between interdependence and independence may increase confidence for both of you.
To help you determine when and how to provide the most appropriate support to a person living in the early stage of dementia consider these tips used by other care partners:
Safety first: Is there an immediate safety risk for the person with dementia to perform this task alone? If there is no immediate risk of injury or harm, provide encouragement and continue to provide supervision as necessary.
Make a positive assumption: Assume that the person with dementia is capable of completing the task. If you sense frustration, try to identify the cause of the frustration before intervening. Focus on his or her current needs, rather than dwelling on the future.
Create a Help Signal: Identify a cue or phrase that you can use to confirm if the person with dementia is comfortable receiving support. For example, you may agree to use a phrase like, “Is there anything I can do to help?” or a nod to signal that it’s ok to chime in if the person with dementia is having difficulty remembering a word or name.
Talk it over: The best way to determine how and when to provide support is to ask directly. Ask the person with dementia what they need or the frustrations they may be experiencing. Talk about it, then make a plan.
Work better together: Find activities to do together and keep the conversation going about expectations for how you will provide support. Check in regularly by asking the person with dementia if you are providing a level of assistance that is comfortable or adequate.
Finding a new balance
While every person experiences the early stage of dementia differently, it is common that a person in the early-stage may need cues and reminders to help with memory. As a care partner, it may be necessary for you to take the initiative to determine how you may be able to help. For example, he or she may need help with:
Focus on the person's strengths and how they can remain as independent as possible, and establish a strong channel of communication. Consider ways to work together as a team. For example, if they are still comfortable balancing a checkbook, you may offer to provide a final review.
- Keeping appointments
- Remembering words or names
- Recalling familiar places or people
- Managing money
- Keeping track of medications
- Planning or organizing
Providing support to a person living with Alzheimer’s disease or a related dementia is an ongoing and sometimes emotional process. As care partner, you may be feeling overwhelmed by emotions that range from fear to hope. Emotions may be triggered by thoughts about how this diagnosis will impact your life, but also the anticipation of future challenges. Learning to recognize your emotions may help you move forward and help the person with dementia live the best life possible.
Denial. The diagnosis may seem unbelievable or difficult to accept. Short-term denial can be a healthy coping mechanism that provides time to adjust, but staying in denial too long can prevent you and the person with the disease from making important decisions about the future. It also can delay his or her ability to live a quality life. If you are experiencing denial about the diagnosis, your ability to help the person with dementia will be hampered until you can come to terms with the diagnosis yourself.
Fear. Fears about the progression of the disease and the challenges in providing future care can be overwhelming and can prevent you from focusing on the present.
Stress/Anxiety. Uncertainty about what to expect as the disease progresses and how to support the person with the diagnosis can lead to increased stress.
Anger/Frustration. Anger towards the diagnosis is a common response to feeling a loss of control over the future. You may be feeling resentment about how your role as a care partner will impact your life.
Grief/Depression. Sadness or a sense of loss over your relationship may also lead to feelings of hopelessness. Learn more about symptoms of depression.
Emotions you may experience as a care partner
For more information on the early signs and symptoms of Alzheimer's visit: www.alz.org
For help caring for an elderly spouse or parent with Alzheimers, call Heritage Senior Care (800) 562-2734