Adult child walking with senior

What to Expect After Dementia is Diagnosed

Dementia consists of a variety of symptoms affecting the way a person functions due to impairment of their brain. It comes in many forms — including Alzheimer’s, Parkinson’s, Lewy Body, and Frontotemporal — and can lead to feelings of grief, loss, uncertainty, worry, and anger. Dementia unfolds in different stages, each with its own distinct characteristics. When caregivers fully understand these stages, it helps them to more effectively support their loved ones. It is important to remember that every individual with dementia will have a slightly different journey.

Early Stage Dementia

Early stage dementia is characterized most frequently by memory deficits that begin to affect how a person gets through each day. A person in this stage may appear withdrawn, frustrated, short tempered, or rude. They understand that something is wrong, but don’t know how to fix it. During early stage dementia, problem-solving is one of the primary abilities affected. To cover for it, they may deflect or blame things on their closest loved ones. Understanding that this is a true deficit that is uncontrollable will help to provide the grace, forgiveness and love they need.

What Does My Loved One Need from Me in Early Stage Dementia?

During early stage dementia, your loved one needs you to help keep them safe by assisting with problem solving or helping to prevent problems throughout their day. Unconditional love and support, despite occasional rude comments or accusations borne from frustration and anger, is necessary. People with early stage dementia can handle most of their own basic care, so be sure to support their independence and maximize their success by acknowledging and complimenting them on their accomplishments.

Setting up the environment and/or supplies they may need for their previously enjoyed roles, routines, and hobbies will also be key. Your loved one will have a strong need for identity, purpose, occupation, and certainty. Keeping the same routine over and over each day or week will help to avoid any problems and keep negative feelings/expressions at bay.

Middle Stage Dementia

Middle stage dementia will be more noticeable to the average person than early stage because loved ones will no longer understand when a task is complete. Otherwise simple routines like getting dressed will become frustrating challenges. Despite this, loved ones will work hard to maintain their independence. They can explore through walking and contribute to the world they live in by using their hands. Their physical bodies are not affected even though their mind is no longer telling them what comes first, next, and last when performing tasks or activities.

These individuals appear quite busy at times for what appears to be no reason, but this restlessness is their attempt at maintaining their purpose and their identity. This is the stage of dementia where a person may wander or rummage through items that may or may not be their own. Without a caring loved one keeping these individuals engaged and occupied throughout the day, they may internalize themselves and become depressed and withdrawn.

What Does My Loved One Need from Me During Middle Stage Dementia?

At middle stage dementia your loved one needs you to help support their primary ability to walk and use their hands. Think about their interests or hobbies and simplify them — the fewer steps the better. Consider choosing one element of a hobby that may be repetitive, and then ask for help with it. Being able to assist you with that task will result in a feeling of accomplishment for your loved one. Keeping an extensive list of options for engagement will help to eliminate unwanted wandering or rummaging. These individuals also need to feel a sense of purpose, comfort, security, familiarity, acceptance, and inclusion in the world around them.

Late/End Stage Dementia

By late/end stage dementia, the physical effects of the disease become more evident, as walking, standing, and even sitting may be difficult. Despite that, these individuals maintain their senses and emotions, allowing them to feel their world and engage with it through the sensory experiences of taste, touch, hearing, smell, and sight. Using familiar experiences broken down into sensory pieces will help stimulate responses and emotions that bring joy and meaning all the way through to the end of life.

It is important to encourage loved ones to eat and feed themselves, even if it’s simply finger food. Communication, even if it’s only 1-2 words that make sense, will help to promote success and fulfillment. Helping your loved one to enjoy movement (walking, standing, sitting, or supported stretching), music, and smell will provide the most meaningful experiences as they progress through late and end stage dementia.

What Does My Loved One Need from Me at this Final Stage of Dementia?

At late/end stage dementia your loved one needs you to be present with them, using touch whenever possible to provide comfort and security. They need you to tell them stories, even if they do not respond as you would expect. Laugh and joke with other loved ones with them present in the room. Allow them to observe and participate in things that you are doing through their senses of sight, touch, smell, hearing, and taste. They need to feel the love, security, and inclusion that was so common to them when they could interact with others more easily.

Be happy and excited when they can engage with you in simple communication – even a smile or a wink. Your goal should always be to bring about emotion using sensory experiences or sharing memories about the past that utilize pictures, items, or other things that may relate to that to help jog those long-term memories.

Dementia is a complex symptom of many other diseases. Continuing education is necessary to help society better understand how we can support and care for the individuals affected and their families. There is no cure now, but researchers are working diligently to identify factors that may contribute to finding one in the future. Utilizing resources, support groups, and communities of professionals will help to decrease your uncertainty and add an element of comfort as you work through this journey. You will most likely still worry, wonder, and question daily – but this simply means you care about your loved one and want the best for them.

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