Dementia Caregiver Support: The Psychology of Living with a Loved One's Diagnosis

What might you feel as a dementia caregiver? Read about emotions after diagnosis, communication tips, anticipatory grief and ways to protect your own wellbeing.

Noticing that your mother asks the same question again and again in one day, that your father suddenly forgets the way to a shop he has walked to for years, or that your spouse sometimes fails to recognise you is an experience that is hard to put into words. A dementia diagnosis changes the life not only of the person who receives it, but of everyone who loves them. Being a dementia caregiver can mean living with bewilderment, denial, sadness, anger, compassion, guilt and exhaustion all at once. In this article I look at the psychological burden of living with a relative who has been diagnosed with dementia, the emotions that commonly arise, suggestions that can make everyday communication easier, and ways of protecting yourself. I would like to say from the outset that for anything concerning diagnosis, treatment and the medical course of the illness, you must consult doctors in the relevant field, such as neurology or geriatrics.

What Is Dementia and How Does It Affect the Family?

Dementia is not the name of a single illness. It is a general term for a progressive decline over time in memory, thinking, language, orientation, decision-making and everyday living skills. Alzheimer's disease is one of the best-known causes, but there are different types of dementia with different causes. Which type is involved, how it may progress and which treatment options are suitable can only be determined by a medical assessment.

For a family, dementia is a long journey. In the early stages a person may be largely independent, while later the need for daily care may grow. Along the way, family members do not simply take on practical responsibilities; they also have to adjust to changes in their loved one's personality, behaviour and place in the relationship.

Relatives of people with dementia often describe the feeling, "I am losing them and yet they are still here with me." This contradictory experience is one of the hardest parts of the process.

What Emotions Do Dementia Caregivers Experience?

After the diagnosis, and at different stages of the journey, many emotions may be experienced together. None of them is "wrong".

• Shock and denial: Dismissing the symptoms by saying "It is just old age, everyone forgets", or finding it hard to accept the diagnosis.
• Sadness and anticipatory grief: Mourning the person's former self, shared memories and the plans you had expected to make together, while they are still alive.
• Anger: Anger at the illness, at life, at family members who do not help, and at times even at your relative.
• Guilt: Blaming yourself for moments of impatience, for feeling you are not doing enough, or for thinking about professional care options.
• Shame: Feeling embarrassed about your relative's inappropriate behaviour in public.
• Anxiety: Constant worry about your relative being alone at home, getting lost or falling, or about what the future holds.
• Loneliness: Feeling that the people around you do not fully understand what you are going through.
• Compassion and meaning: Alongside the difficulties, finding meaning and closeness in the new ways of connecting with your relative and in small moments together.

The intensity of these feelings can change over time. One day you may feel accepting, and the next you may be overcome by deep sadness again. This fluctuation is a natural part of the process.

Some family members, particularly adult children, may also carry the worry, "Will I get this illness too?" This is a natural concern, but questions about risk and heredity require an individual medical assessment. Talking these questions through with a doctor is healthier than letting general information from the internet inflate your anxiety.

Anticipatory Grief: Mourning Before the Loss

One of the most distinctive experiences that come with dementia is anticipatory grief, that is, grief felt in advance of an expected loss. Your relative is physically beside you, but the qualities that defined them, such as their sense of humour, their memories and the way they once recognised you, may gradually change. These losses are silent and are often unnoticed by those around you. There is no funeral and no condolence visit, yet the loss is real.

Recognising and naming anticipatory grief can help you make sense of your feelings. Instead of judging yourself with "Why am I so sad when they are still alive?", acknowledging that you are experiencing a genuine loss can be healing. For more on the general course of grief, you can read my article on the grieving process.

Being a Dementia Caregiver in Turkey

In Turkey, care for older people is largely provided within the family, and care for people with dementia is most often taken on by a spouse, a daughter or a daughter-in-law. This situation brings some particular difficulties.

Putting symptoms down to old age: The thought "Well, they are getting on, forgetfulness is normal" can delay seeing a doctor. Yet having changes in memory and behaviour assessed matters both for an accurate diagnosis and for preparing the family for what lies ahead.

Stigma and privacy: Some families tend to hide their relative's condition from relatives and neighbours. This makes it harder to get support and leaves the caregiver isolated.

Cultural attitudes towards care homes: In many families, professional care options are still seen as a kind of "disloyalty". Yet under the right conditions, professional support can protect both the safety of the person with dementia and the mental health of the family. This decision is different for every family and calls for a joint assessment by the doctor, social workers and the family.

Extended family dynamics: Unequal sharing of the care burden among siblings, disagreements about decisions and criticism from afar are common sources of tension.

Financial and practical difficulties: The high cost of living can make it harder to obtain care support. Municipal home care services, hospital social work units and dementia associations are among the places you can turn to for information and support.

Family members living far away: Adult children who have moved to big cities or abroad often follow their parents' situation in their home town through phone calls or short visits. Because a person may seem more composed during a brief visit, a sibling living far away may not fully grasp how serious things are, which can lead to tension with the sibling who lives close by and provides daily care. Even from a distance, every dementia caregiver can share the load by taking on concrete tasks such as keeping track of appointments, handling paperwork, contributing financially or giving the main caregiver regular moral support.

Imagine a woman in her early sixties who looks after her husband all day after his dementia diagnosis. Towards the evening he becomes restless, wants to leave the house and sometimes does not recognise her. She notices that, on the one hand, she loves him dearly and, on the other, she thinks, "This man is no longer the person I married", and she feels bad about having that thought. These contradictory feelings are very common among dementia caregivers, and they need to be talked about.

Tips That Make Daily Life with a Relative with Dementia Easier

The suggestions below are for general information only. For guidance specific to your relative's situation, it is important to consult the doctor and healthcare team treating them.

Make communication easier

• Use short, simple sentences that carry a single message.
• Make eye contact and speak calmly and slowly.
• Avoid questions such as "Don't you remember?", as these can cause shame and distress.
• Instead of correcting your relative's mistakes or arguing, focus on their feelings. For example, if they ask about their mother who died years ago, recognising that they miss her and keeping them company in that feeling is often more soothing than repeatedly reminding them of the facts.

Create a daily routine

A predictable daily routine can create a sense of security for people with dementia. Regular times for getting up, eating, walking and sleeping may reduce restlessness.

Make the home environment safe

Measures such as arrangements that reduce the risk of falls, hob and door safety where needed, and keeping medication securely stored can put both you and your relative at ease. It is helpful to ask the healthcare team which arrangements are necessary.

Support the abilities that remain

Focus on what your relative can still do. Watering plants, folding laundry, listening to favourite music or looking at old photographs can strengthen both their sense of meaning and the bond between you.

Approach challenging behaviour calmly

During the course of dementia, behaviours such as restlessness, asking the same question over and over, hiding belongings or blaming others for things they believe are lost may appear. Remembering that these behaviours are often not deliberate stubbornness but an expression of confusion, fear or an unmet need caused by the illness can soften your response. Noting at what times and in what situations a behaviour increases makes it easier to spot triggers. For example, for restlessness that grows towards evening, calming the surroundings, adjusting the lighting or playing familiar music may help. Even so, if the behaviours intensify, it is important to share these notes with the doctor.

Plan practically and legally at an early stage

Talking about financial matters, banking, property and healthcare preferences in the early stage of the illness, while your relative can still express their own wishes, reduces uncertainty later on. Getting information from a lawyer on these matters can ease the pressure on the family to make hasty decisions in moments of crisis. Although these conversations are difficult, they are a way of respecting your relative's wishes.

Do not forget to look after yourself

• Share care tasks with family members and other sources of support as far as possible.
• Plan short breaks regularly; even a few hours away can be restorative.
• Do not postpone your own health check-ups.
• Look into support groups where you can meet other caregivers going through a similar experience.
• Share your feelings with someone you trust.

I have covered the fatigue that a long-term caring load creates in more detail in my article on caregiver burnout.

Dementia can change a person's memory, but the feeling of love and compassion often lasts longer than words.

When Should You Seek Professional Support?

Caring for a relative with dementia is a long and demanding process. Seeking support from a mental health professional may be helpful in the following situations:

• If constant tiredness, hopelessness and a low mood have lasted for weeks
• If your sleep has been seriously disrupted
• If you find it hard to control your anger and feel intense guilt afterwards
• If you feel completely alone and isolated
• If anxiety shows itself through panic-like physical symptoms
• If conflicts within the family make the caring process even harder
• If thoughts of harming yourself or ending your life cross your mind

Thoughts of harming yourself are an emergency; call 112 (Turkey's emergency services) without delay or go to the nearest emergency department.

If sudden changes in your relative's behaviour, aggression, marked restlessness, serious disruption to their sleep-wake pattern or eating problems appear, be sure to share them with the doctor treating them. Assessing such changes and making treatment decisions is the doctor's responsibility.

How Are the Challenges of Being a Dementia Caregiver Approached in Therapy?

Individual therapy offers a space in which dementia caregivers can express their feelings without being judged and rediscover their own resources. Topics often worked on in this process include:

• Working with anticipatory grief: Recognising and naming the silent losses that have occurred, and making room for grief to be experienced in a healthy way.
• Working with guilt and anger: Within a cognitive behavioural therapy framework, examining thoughts such as "A good son or daughter is never impatient" or "Asking for help means abandoning them", and developing a more compassionate inner voice.
• Stress management and self-care: Making room in daily life for rest, social support and enjoyable activities.
• Problem-solving and decision-making: Clarifying your thinking about difficult decisions such as care arrangements, the division of labour and planning for the future.
• Family communication: Being able to talk about responsibilities fairly and openly with siblings and other family members.
• Schema awareness: Noticing how schemas such as self-sacrifice and unrelenting standards influence the way you provide care.

For people who find it hard to leave the house because of heavy caring responsibilities, sessions can also be held online. This is a practical option, particularly for family members who cannot leave their relative with dementia alone for long.

Frequently Asked Questions

I suspect my relative may have dementia. What should I do?

Make a note of the changes you have noticed in memory, behaviour or daily tasks, and see a doctor together with your relative. Forgetfulness can have many different causes, and some of these are treatable. Decisions about diagnosis and treatment can only be made through a medical assessment.

As a dementia caregiver, is it normal to feel impatient with my relative?

Yes. Feeling impatient and angry under the weight of long-term caring is very common. These feelings do not mean your love has lessened. What matters is noticing these feelings, finding safe places to express them and being able to give yourself a break.

Should I tell my relative with dementia about their diagnosis?

This is a sensitive decision that varies with your relative's stage of illness, personality and wishes. In the early stages of the illness, many people want to take part in decisions about their own future. It is advisable to consider this with the doctor who is treating them.

How do I explain to my children that their grandmother has dementia?

It is important to use simple, honest language suited to the child's age: "Grandma has an illness in her brain, so sometimes she forgets things or gets confused." Being open to the child's questions and letting them express their feelings helps them adjust to the situation too.

• #dementia
• #alzheimer's
• #family caregiver
• #anticipatory grief

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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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