Communication Strategies for Caregivers of Individuals with Dementia caused by Alzheimer’s Disease

By definition, dementia is a syndrome that results from acquired brain disease, such as Alzheimer’s Disease. Dementia is characterized by life-altering, progressive decline in memory and other cognitive domains, which ultimately results in interference in one’s ability to complete activities of daily living and independent functioning without assistance (ASHA). As a therapist who enjoys working with the geriatric population and their families, I can attest to the reality that this umbrella definition of this life-altering disease does little to explain what families with individuals with dementia battle each day. This progressive, intrusive condition takes a previously normal functioning individual and progressively turns them into individuals who their families can hardly recognize. 

I’ll never forget the first time in my career as a speech-language pathologist that I witnessed the heart-wrenching phenomenon of a family member realizing that their parent was declining cognitively. I was completing a clinical rotation; I entered the room to find a male family member crying and pleading with his mother. His mother did not remember him and his pain upon realizing this new reality was palpable for me. He continued to cry, he began to scream as he abruptly exited the room, leaving his mother sitting in utter confusion. At that exact moment, I realized that often as clinicians, we become so encapsulated by our patient’s condition and how to best treat it, and we often forget that our clinical expertise also extends to counseling families in how to best communicate with these progressively declining patients. 

Communication is such a vital part of who we are as human beings. With individuals with dementia/Alzheimer’s disease, communication is impacted in various ways and varies from one person to the next. In general, individuals who are being impacted with this progressive disease experience issues in communication, including, but not limited to: 

1. Speaking less frequently 
2. Word-finding difficulties 
3. Describing familiar objects rather than calling them by name 
4. Losing train of thought easily and frequently 
5. Relying on non-verbal communication more than verbal communication 
6. Difficulty organizing communication 

Changes in communication frequently vary as an individual progresses into the diseases. Alzheimer’s disease is frequently broken down into three stages: early stage, middle stage, and late stage. At each stage, communication can look different, resulting in different types of strategies being beneficial; however, I have learned that one of the most essential strategies that we must possess when communicating with an individual with dementia/Alzheimer’s disease is this: patience. 

Early Stage

During the early stage, individuals with dementia are frequently capable of continuing to engage in meaningful conversational exchange with their families, caregivers, and peers. These individuals can successfully manage to complete their ADLs (activities of daily living) and continue engagement with their social activities with little difficulty. However, these individuals may frequently repeat themselves and feel overwhelmed and frustrated as they begin to have difficulty with word finding and/or logically piecing together their thoughts/ideas. 

Tips for effective communication in the early stage: 

1. Speak directly to the individual, not to their caregivers, companion, or others. 
2. Take time to listen to the person as they express himself/herself: needs, feelings, thoughts, etc. 
3. Don’t exclude these individuals from conversations or make assumptions about their abilities and limitations in communicating. 
4. Discuss what method of communication is the most comfortable. Communication can include in-person, email, phone calls, text messages, etc. 
5. Be a present, committed friend/caregiver to the individual. The early stage is difficult on the person with dementia, as they are aware that the disease will progress and are beginning to become aware of their limitations. Your encouragement, friendship, and dedicated support are essential. 

Middle Stage

In general, the middle stage of dementia is the stage that lasts the longest for individuals. This stage can last for many years, and frequently is the stage where communication begins to be impacted more drastically. In the middle stage, individuals tend to require more direct care from caregivers as their ability to complete ADLs declines drastically. 

Tips for effective communication in the middle stage:

1. Speak slowly and clearly 
2. Maintain eye contact and share smiles, this allows the individual to know that you care 
3. One-on-one conversation 
4. Communicate in quiet space with few distractions 
5. Increase wait time, giving the individual appropriate time to respond 
6. Limit the number of questions you ask and ask yes/no questions 
7. Give visual cues, step-by-step clear instructions, and write notes 
8. Avoid arguing, criticizing, and correcting

Late Stage 

The late stage of dementia can last from several weeks, and in some instances last for several years. During this stage, communication has declined drastically. Individuals at this stage require around-the-clock care secondary to the inability to care for themselves. These individuals may exhibit difficulty with completing activities of daily living including sleeping, eating, drink, getting dressed, toileting, and unfortunately communicating. These individuals frequently rely on non-verbal communication and frequently require direction to complete the most basic tasks. 

Tips for effective communication in the late stage:

1. Treat the individual with dignity and respect
2. Consider the emotions of these individuals
3. Use the five senses as a form of communication to these individuals. Touch, sight, sound, smell, and taste can be beneficial tools to aide them in completed activities such as eating, sleeping, getting dressed. 
4. Encourage the use of non-verbal communication such as pointing or gesturing to preferred items
5. Always approach the individual from the front and let them know who you are
6. Hand-over-hand and simple verbal directions can help them with completing ADLs. 

There is no perfect manner to communicate with individuals who have been diagnosed with the life-altering condition known as dementia. However, the most beneficial advice that I have been given in working with these individuals is to remember that the person you love deeply is always there. At all stages of the disease, it is imperative to: be patient, simplify your talking, provide simple choices, allow appropriate wait time, and be okay with repeating yourself. Most importantly, always be comforting, as scary as it is for you watching your loved one decline, it’s as equally as scary for them and they need your love, encouragement, and care. 

-Alesha D. Prater Kiser, MS, CCC-SLP 

References:

https://www.asha.org/public/speech/disorders/dementia/

Alzheimer’s Association. Communication: Best ways to interact with the person with dementia. 2010.