Alzheimer’s – The Stages of Caregiving

Source: Alzheimer’s Association

Early Stage Caregiving

Early-stage Alzheimer’s patients are those patients who are in the beginning stages of their disease. They are usually quite independent, driving themselves places, working or even take part in social activities. The early-stage doesn’t have a time limit and can last for years, however a diagnosis will affect everyone who loves and cares about the person diagnosed with it.

Early-stage patients are highly independent. A caregiver only needs  to provide support and companionship . As a caregiver, one may find themselves in a very unfamiliar situation and will have a lot of questions. This is a normal and expected response to the sudden responsibility. Caregivers can start planning for the future in the early stages. These plans should include legal, financial, and long-term care planning.

At this stage since they are mostly independent the biggest part of a caregiver’s assistance could just be helping them with a daily schedule to follow.  While not all people experience this disease the same, it is common for early-stage Alzheimer’s patients to use cues to help them remember. While helping a loved one it is also important to make them as independent as possible.

Caregiving to a person living with Alzheimer’s will be an ongoing and often emotional process. Understanding what is causing the emotion and how to deal with it will help the caregiver and patient  deal with the disease.

Newly diagnosed patients  don’t to give up and want to live the best they can for as long as they can. Staying healthy, independent and engaged are common desires among people who have just been diagnosed. Caregivers are important in making these goals a possibility.

Caregivers must do things that make them feel content and healthy, as this will be crucial to prevent caregiver fatigue and burnout.  Educating  oneself about the disease can make a caregiver  more confident to handle the disease as it progresses. Knowing what lies ahead can help one make plans for the future.

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 Middle Stage Caregiving

The middle stages of Alzheimer’s are usually the longest and the patient may require more care, putting more stress on the caregiver.

During this stage expressing thoughts and performing routine tasks become more challenging. The caregiver will need to be flexible and patient during this time. At this stage Alzheimer’s patients may also experience depression, anxiety, irritability and repetitive behaviors. It is important for caregivers to understand these behaviours and assist them accordingly. Caregivers will also have to  improve communication by speaking slowly and distinctly in a gentle tone.

To deal with the stress, caregivers should reach out to other caregivers through support groups to share experiences and grief. This will also allow the caregiver to gain more knowledge about the condition.

Self-care is also an important aspect at this time. Caregivers should take breaks, even if it is only for a few moments. Learning about respite services in the community and allowing friends and family to help are some ways to reduce the burden.

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Late-Stage Caregiving

The late stage of Alzheimer’s may last several weeks or several years. As the disease advances, the needs of the person change. They have difficulty in eating, walking, are vulnerable to infections, and may need full-time personal care. The role of a caregiver should be to focus on preserving the quality of life and dignity. Though a person in late-stage Alzheimer’s loses the ability to express, the core self remains to some extent. At this point, the caregiver can express care by the senses such as touch, sight, smell, taste, and sound. For example, reading a book together, preparing food together, reading portions of books, and so on.

One of the most important daily tasks for a caregiver is monitoring eating habits. Adding sugar to food or serving their favorite foods may encourage eating. Doctors may also suggest supplements between meals. After eating, make sure the person is upright for thirty minutes to aid digestion. Adapt foods if swallowing is a problem and encourage self-feeding. Assist the person with feeding if needed. Make sure they are hydrated. Sometimes they may not realize they are thirsty and forget to drink which may lead to dehydration. Keep monitoring weight. Weight loss during the end of life is to be expected, it may also be a sign of inadequate nutrition or another illness.

Difficulty with toileting is also very common at this stage. To handle this problem maintain a toileting schedule. Limit fluids before bedtime. Use absorbent and protective products like adult disposable briefs and bedpans.Keep monitoring the bowel movements.

A person with late-stage Alzheimer’s can be bedridden or chair bound. This inability to move around can cause skin breakdown and pressure sores. To keep skin and body healthy, treat cuts and scrapes immediately. Keep teeth and mouth clean.

Communicating pain becomes difficult in the late stages. If pain is suspected consult a doctor. Look for physical signs like pale skin tone, flushed skin tone, pale gums, mouth sores, vomiting, or swelling of any part of the body. Pay attention to non-verbal expressions like gestures, facial expressions, and be alert to changes in behavior such as anxiety, agitation, trembling, and sleeping problems.

At this stage, the caregiver will need to assess if the needs of the patient can be provided at home. This may mean moving the person to a facility to get the care needed. Deciding on late-stage care maybe one of the most difficult decisions for families but gathering information before proceeding will be useful. At the end of life, another option is hospice. It focuses on quality and dignity by providing comfort, and support services.

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