How does Parkinson's disease affect a person's psychology? Read about tremor-related shame, withdrawal, anxiety and depression, and how families can help.
Picture a retired teacher: for years she wrote neat letters on the blackboard, and she was the one who filled in everyone's petitions in the neighbourhood. Now her hand trembles when she signs her name, and she puts the pen down and says, "You write it." From the outside, Parkinson's disease is often seen as tremor and slowness; but something much quieter happens in the person's inner world: shame. Being unable to hold a tea glass at the coffee house, being unable to join the line dance at a wedding, fearing a loss of balance while standing in line for prayer at the mosque… Parkinson's disease psychology is shaped not only by the illness's effects on the brain but also by the fear of losing one's place in the community. In this article I look at what older people diagnosed with Parkinson's, and the family members who live with them, may experience, and how they can support each other.
Why Should Parkinson's Disease Psychology Be Discussed Separately?
Parkinson's is a slowly progressing neurological illness that affects the areas of the brain that regulate movement. Tremor, muscle stiffness, slowed movement and balance problems are its best-known symptoms. But the illness does not affect movement alone; it can also affect mood, sleep, energy and speed of thinking.
This has an important consequence: the anxiety or low mood experienced by someone with Parkinson's cannot always be explained by "low spirits". The illness's effects on brain chemistry can also contribute to the picture. For this reason, changes in mood need to be taken seriously as part of the illness and shared with the neurologist. Some symptoms may also be related to treatment; only the doctor can make that distinction.
For the family, the biggest misconception is to interpret the patient's withdrawal as laziness or stubbornness. Behind the sentence "My father doesn't want to do anything any more" there is sometimes tiredness, sometimes shame, and sometimes a lack of motivation linked to the illness itself.
Emotional Changes Seen in People With Parkinson's
Shame and the anxiety of being seen
Tremor, especially in public, can make a person feel constantly watched. Small moments such as spilling soup, dropping coins while taking change or being unable to sign one's name can turn into great embarrassment. To avoid these moments, many patients cut down on going out, visiting friends, or even sitting at the table with their family.
Changes in facial expression and being misunderstood
In some people, Parkinson's also affects the facial muscles; expressions diminish, and the face may look blank or sulky. The voice may become quieter and speech more monotonous. Even when the person is actually happy, those around them may think they are "sulking" or "uninterested". This misunderstanding makes the patient feel even more alone.
Anxiety and the fear of "freezing"
Some patients describe their feet suddenly feeling stuck to the ground while walking. This experience can cause intense anxiety, particularly in crowded places, at doorways or when crossing the road. As anxiety rises, moving can become even harder, and a vicious circle forms.
Low mood and lack of motivation
Losing interest in things they used to enjoy, struggling to get out of bed in the morning and feeling hopeless about the future are emotional difficulties that can be common in Parkinson's. Sometimes there is no clear sadness, only a sense of apathy and stillness. Both are situations to raise with the doctor and with a mental health professional. I discuss in detail how low mood can look different in later life in my article on depression in older adults.
Fluctuations during the day
Many people with Parkinson's notice that their movement and mood change during the day. Someone who walks comfortably in the morning may struggle to get up from a chair in the afternoon. When the family is not aware of this fluctuation, hurtful questions may be asked, such as "You were perfectly fine this morning, why can't you do it now?" It is important to talk about this variability with the doctor and to adjust the daily routine accordingly.
How Is a Parkinson's Diagnosis Experienced at Different Ages?
Although Parkinson's is mostly seen in later life, some people are diagnosed at a younger age. The psychological burden differs with age.
The older patient: dignity, independence and a place in the family
For an older person, Parkinson's can feel like a blow to the authority and respect earned over the years. Being the head of the household, having their hand kissed by younger relatives at festivals, telling stories to the grandchildren: roles like these are part of a person's identity. When the illness threatens these roles, the person either resists angrily or withdraws completely. The family's task is to protect these roles as far as possible. Continuing to sit at the head of the festive table, being the first whose opinion is asked in family decisions, and having time set aside to tell the grandchildren about the old neighbourhood or their youth help the person feel that they are still valued. In older patients, hearing or vision problems or other chronic illnesses may also be part of the picture; so when speaking to them, standing where they can see your face, using short sentences and giving them time to answer make communication easier.
The working-age adult diagnosed earlier
For someone diagnosed at a younger age, working life, raising children and plans for the future come to the fore. Questions such as "How long can I keep my job?" and "Is this how my children will remember me?" can heighten anxiety. These people sometimes hide the illness for months from their workplace and even from their family.
Grandchildren and children at home
A child who sees their grandfather's or grandmother's hand trembling will ask questions about it. Giving a calm, age-appropriate explanation to the question "Why is Grandpa shaking?" reduces both the child's fear and the patient's embarrassment: "Grandpa's brain sometimes sends too many messages to his hands, so his hand shakes. It isn't catching, and it doesn't hurt him."
What to Say, and What Not to Say, to Someone With Parkinson's
The fictional sentences below are meant to show how the same intention can land very differently depending on the tone.
Sentences you may want to avoid:
- "Keep your hand still; if you paid a bit more attention, it wouldn't shake." (Presenting tremor as something voluntary deepens shame.)
- "Why are you always scowling like that?" (The change in facial expression is often related to the illness.)
- "You were walking this morning; now you're just making a fuss." (Not knowing about daily fluctuations makes the person feel guilty.)
- "You sit down, we'll look after the guests, your hand is shaking." (Even if well-meant, it makes the person invisible.)
- "The neighbour's father had Parkinson's too, and in the end he was bedridden." (Someone else's story increases anxiety and does not describe your loved one.)
Sentences you might try instead:
- "Shall I put your tea in a mug with a handle, or are you comfortable like that?"
- "I can't tell from your face; how are you feeling today?"
- "Afternoons seem to be harder; shall we move things to the morning?"
- "You welcome the guests, and I'll bring the refreshments."
- "Let's ask the doctor together what they think about this."
Parkinson's Disease Psychology and the Family: What Can Be Done in Daily Life?
Living with Parkinson's is a process of adjustment for the family too. The suggestions below can help the person protect both their independence and their dignity.
- Adjust your pace to theirs. Rushing them while walking in the street, on the stairs or when getting on a bus increases both the risk of falling and anxiety. Leaving earlier, waiting and not showing impatience make a big difference.
- Adapt the surroundings quietly. Small changes such as mugs with handles, easy-grip cutlery, clothes without buttons and grab bars in the bathroom make things easier without saying "You can't do it any more". It is important to choose these adaptations together with them.
- Don't let them give up their social life, but don't force them. Finding middle ground, such as a small family meal instead of a crowded wedding, a quiet time at the neighbourhood mosque instead of Friday prayers, or a short walk instead of a long trip to the market, maintains the person's connection with the world.
- Support movement and routine. Doing the physiotherapy or exercises recommended by the doctor together can be good for both body and mind. The exercise plan itself must always be set by the doctor and the physiotherapist.
- Take medical questions to the doctor. Ask the neurologist about anything to do with treatment, medication times or newly appearing symptoms. Noting changes such as hallucinations, nightmares or confusion and bringing these notes to the appointment makes assessment easier.
- Protect the caregiver. Long-term care can be a heavy burden for a spouse or adult child. I have also discussed the effects of living with a chronic illness on the family in my article on the psychology of chronic illness.
Parkinson's changes the body's pace; but it does not have to change a person's worth, their place in the family or their right to have a say.
What Do the Spouse and Adult Children of Someone With Parkinson's Feel?
When talking about Parkinson's disease psychology, we also need to see the inner world of those who live in the same house. Because the illness does not come to one person alone; it comes to a relationship and to a household.
Think of a couple who have been married for more than forty years. For years one of them took care of the outside tasks, the bills and the driving; now all of this falls to the other. The caregiving spouse grieves the change in their life partner while also trying to carry these new responsibilities in the midst of their own ageing, joint pain and tiredness. Sometimes they lose patience, and then blame themselves for losing patience. The thought "I have no right to be angry with them" does not make the anger disappear; it only stores it up inside.
Adult children often find themselves caught in the middle. With their own jobs, children, rent and bills, they try to keep up with their parents' needs. More of the burden falls on the sibling living in the same city, while the sibling who lives far away feels guilty. When this resentment goes unspoken, the patient also starts to think, "They're fighting because of me."
None of these feelings is a sign of lack of love. All of them are natural side effects of a long and uncertain process. Caregivers also need a space where they can express their own feelings; holding short, regular family meetings, dividing tasks in writing and giving the caregiver at least a few hours' rest each week make this burden bearable.
When Should You Seek Professional Support?
From the point of view of Parkinson's disease psychology, some signs may show that mental health support should be considered:
- The person not enjoying anything for weeks and wanting to stay in bed all the time
- Giving up going out or receiving guests altogether
- Frequently saying things like "I'm a burden to you" or "You'd be better off without me"
- Experiencing intense anxiety or panic-like episodes
- The caregiving spouse or child becoming exhausted, angry and sleepless
Changes in mood must also be shared with the neurologist; if necessary, an assessment by a psychiatrist can be requested. If the patient or the caregiver talks about wanting to die or is thinking of ending their life, do not put this off and do not carry it alone; in an emergency, call 112 (emergency services).
How Are People With Parkinson's and Their Families Supported in Therapy?
Psychological support does not replace the neurological treatment of Parkinson's; considered together with the treatment team, it can contribute to the patient's quality of life.
Within cognitive behavioural therapy, the thoughts behind the shame a person feels in public can be examined: how far thoughts such as "Everyone is looking at me" or "I'll make a fool of myself" match actual experience is assessed together. Returning to avoided settings in small, safe steps, planning enjoyable activities again and building a daily routine around the rhythm of the illness are frequent areas of work. When symptoms of low mood come to the fore, work in the area of depression and mood can be carried out alongside medical follow-up.
In sessions with family members, the role changes brought about by the illness, the burden of care and guilt can be discussed. For family members who have difficulty getting about or who live in another city, sessions can also be arranged online.
Frequently Asked Questions
Why does someone with Parkinson's withdraw so much?
Withdrawal may stem from shame, tiredness, difficulty moving or mood changes linked to the illness. Before interpreting it as a change in personality or as stubbornness, it is important to try to understand the reason and to inform the doctor.
Should I talk about their tremor, or act as if I haven't noticed?
Neither constantly drawing attention to it nor ignoring it completely tends to help. Talking about it in a natural way when the person raises it, and providing the adjustments they need by asking them, is often the most reassuring approach.
My father has Parkinson's and doesn't want to go out in public; should I push him?
Pushing often increases resistance. Instead, it is better to start with smaller, quieter settings that he chooses, to talk about his anxiety and to move forward step by step. If the avoidance goes on for a long time, it may help to see a mental health professional.
Could changes in mood be related to treatment?
Some emotional and behavioural changes may be related to the illness itself, and some to treatment. Making this distinction is the doctor's job; do not change the treatment on your own, but note your observations and pass them on to the neurologist.
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Eda Erkan Alapala
Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.
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