Communication Skills
Starting a New Journey Together: Understanding, Feeling, Empowering
A medical diagnosis—whether Alzheimer’s, Parkinson’s, or another neurological condition—begins a profound transformation that affects not only the individual but also their loved ones and family. In the moment of diagnosis, time seems to stand still, and your mind fills with questions: What should I say? What should I feel? How can I be strong? Every loved one searches their loved one’s eyes for both fear and a hint that life will go on. This article is prepared to help you communicate in a supportive and healthy way with someone who has just received a diagnosis—and to discern which topics to discuss, and which to postpone.
Emotions Behind the New Diagnosis: From Your and Their Perspectives
The announcement of illness can trigger stages such as denial, anger, sadness, and acceptance (the Kübler-Ross Model of Grief) for both the newly diagnosed individual and their family. Everyone experiences this journey at their own emotional pace. According to some studies, especially with progressive neurological diseases like dementia and Parkinson’s, 4 out of 5 people feel anxiety and sadness in the first months after diagnosis (Alzheimer's Association 2022 report). Being aware of the shared emotions is the first step in building good communication.
The Individual’s Perspective: Fear of loss, anxiety over diminished identity and independence.
You, as a Relative: Feelings of loss of control, guilt or helplessness, sense of responsibility.
Sometimes, we avoid talking to hide our vulnerability. Yet science shows that sharing feelings actually empowers rational communication.
First Step: What Should You Pay Attention to When Initiating Conversation?
The first hours and days after a diagnosis are often confusing. The main goal of communication at this stage is to provide reassurance and the sense of togetherness. Here are evidence-based suggestions:
Start with short, clear sentences. Use direct expressions like, "We’re in this together, I’ll always be by your side."
Ask open-ended questions and give space for them to find their own answers: "How are you feeling?" "What’s on your mind?"
Don’t belittle their emotions. Even simple gestures like eye contact or a hand on their shoulder can mean a lot.
Remain present in the moment—focus on today’s needs and feelings, not the future.
"It’s not so much what I say as how I make them feel that truly matters."
Sometimes silence is more valuable than tiring explanations. Allow them to feel comfortable and let them know they’re not being judged.
What Should Be Discussed Right Away?
The right time and place are important for every topic. But research shows that sharing certain basic messages even at the outset can have a protective effect:
Reassurance of togetherness: "We’re walking this path together. Everything is by your side."
Simply express your own feelings: "Getting this news made me sad too. But we can get through this together."
Realistic information about the process: "Some days will be hard, and there will be good times too. We’ll face everything together, step by step."
According to a U.S.-based study, 60% of individuals who feel strong support from their loved ones adjust better emotionally within the first year (Journal of Neurology, 2020).
Which Issues Should You Postpone for Now?
Avoid immediately tackling complex future plans or having anxiety-provoking discussions that don’t require immediate resolution.
Detailed concerns about the progression of the disease: The course is different for each diagnosis. Questions like, "How soon will things get worse?" only increase emotional burden early on.
Legal and financial arrangements: Wills, property, care homes... These are heavy for the first few days and can wait. Set them aside for a month later, if possible.
Major near-future decisions: Whether moving, quitting a job, or telling children—these shouldn’t be rushed into.
Comparisons with other patients: Comparing their situation to "someone else who went through this last year" does not foster productive communication right now.
It’s helpful to delay "big picture" discussions until the mental load lightens—which may take weeks.
Natural, Safe Communication: What Does Science Say?
Many studies have examined "breaking the news" and first conversations in neurological disease. Experts emphasize:
Strong social support reduces the rates of depression and anxiety.
Empathetic, patient communication increases the individual’s adaptation and motivation to cope with illness.
To prevent social isolation, spend time together and plan small activities when possible.
Remember, you both need time to slow down and process your feelings. Don’t put pressure on yourself to "find the right words" early on; warmth and sincerity are more healing than technical accuracy.
Take Care of Your Own Feelings as a Relative
Studies show that relatives often feel like they "should only focus on the patient" in the beginning (WHO 2019, Dementia Report). But in the long run, this leads to burnout, communication breakdowns, and emotional distance. It’s crucial to talk to your own support network and seek professional help if necessary.
Own your emotions: Feeling guilt, worry, anger, or sadness doesn’t make you a bad relative.
Know you are not alone: In Turkey, there are about 1.5 million people with a family member living with dementia. You can join communities who are going through a similar process.
Take small breathing breaks: Short walks, coffee with a friend... These boost your emotional resilience.
Practical Tips: How to Talk Face-to-Face or by Phone?
Whatever the case, consider these practical tips for communication:
Choose a comfortable environment: A quiet space with minimal distractions improves conversation quality.
If speaking by phone: Soften your tone, speak slowly, and use affirming phrases regularly.
Empathy in your questions: Approaches like "Do you feel ready to talk about this?" help build trust.
Prioritize listening over talking—whether face-to-face or on the phone, it’s always best. Communicate "I understand you" both through words and body language.
Common Mistakes: Words and Behaviors to Avoid
Well-intentioned words can sometimes be misunderstood and make things harder. Avoid these approaches:
Phrases like, "Don’t worry, it’ll pass!" or "Others have it worse..." can trivialize their feelings.
Overprotective behavior: Respect their adulthood instead of treating them like a child.
Use humor cautiously: Ill-timed jokes can negatively impact their mood.
Sometimes just saying "I’m here for you" is a thousand times more powerful than long lectures.
Finding Balance: Delaying, Discussing, Sharing
Each illness, person, and family is very different. What matters most is not to rush into communication as this new life begins with diagnosis; take your time with difficult conversations, address them when the time is right, and take small daily steps. Let your plans be flexible—listen, and shape them together.
Final Words: With Love, Calm, and Hope
Sprinkle small crumbs of hope into the patient’s past, your shared memories, and the future. There is much to talk about, but at every step of this journey, remember that there is a strong bond beyond words. What will never be forgotten is saying "I’m here for you" and the loving journey you take together.
Resources
Alzheimer's Association (2022). Facts and Figures Report.
Kübler-Ross, E. (1969). Death and Dying.
Journal of Neurology. (2020). Family Support in Neurodegenerative Diseases.
WHO (2019). Dementia: A Public Health Priority.
Next Blogs Post
