Newsletter 5: July 2026

A surprising aspect of caring for someone with dementia is that loneliness does not necessarily occur only during periods of physical solitude. 

In fact, many carers report feeling most isolated even when others are around them. 

Carers may be present at family gatherings, conversing with neighbours, meeting friends for coffee, or waiting in a supermarket queue. Externally, everything appears ordinary. Internally, however, they carry a burden that few people around them perceive. 

This is one of the hidden realities of caring. 

“People ask how I’m doing, but they don’t really want to know.” 

Many carers become experts at giving reassuring answers.  

“We’re managing.” 

“He’s doing OK.” 

“We’re taking it one day at a time.” 

These responses may be partially accurate, but they seldom convey the full extent of the experience. 

Behind these brief statements may lie another sleepless night, a challenging morning assisting with dressing, repeated conversations, concerns about medication, administrative tasks, cancelled plans, or the calm grief of witnessing further cognitive decline. 

Most conversations do not accommodate the complexity of these experiences. 

Over time, many carers cease attempting to explain their circumstances. 

This is not due to a lack of need for support, but rather because explaining becomes exhausting. 

The gap between sympathy and understanding 

Most people genuinely care. 

Friends may ask after your partner, parent or relative. They may offer kind words or tell you to “look after yourself.” 

These gestures come from a good place. 

Nevertheless, carers may still experience a clear sense of being misunderstood. 

Unless an individual has direct experience with dementia, it is often difficult to comprehend its unrelenting nature. Many people conceptualise caring as assisting with practical tasks, providing transportation to appointments, or offering medication reminders. 

Those things certainly matter. 

However, much of dementia care occurs in contexts that are not visible to others. 

It involves persistent vigilance for signs of distress. 

It requires noticing subtle mood changes. 

It entails gently correcting without causing embarrassment. 

It includes responding to repeated questions with as much patience as possible. 

It involves expecting potential problems before they happen. 

It requires absorbing frustration, anxiety, fear, and sadness while working to maintain personal composure. 

Much of this work leaves no observable evidence. 

There are no photographs of it. 

No certificates. 

Often, there are not even conversations acknowledging this work. 

Emotional labour that nobody notices 

Psychologists use the term ’emotional labour’ to describe the effort required to manage both personal and others’ emotions. 

For carers, emotional labour frequently becomes a continual presence. 

You may constantly monitor your own reactions because you know anger or impatience will only make things harder. 

You choose your words carefully. 

You smile when you’re exhausted. 

You reassure someone who no longer remembers yesterday while privately mourning the life you once shared. 

You become the keeper of routines, appointments, finances, medications, family communication, and emotions. All of this occurs while attempting to conceal feelings of being overwhelmed. Sometimes feel. 

Because so much of this happens internally, other people may have little idea how much energy. The result may be a distinct sense of invisibility. 

People see what you do. 

Very few individuals recognise the individual cost involved. 

Feeling alone in a room full of people 

Many carers describe another painful experience. 

Carers may attend social events but often feel a diminished sense of belonging. 

Conversations revolve around holidays, retirement plans, grandchildren, work, or hobbies. 

Meanwhile, carers’ daily lives become structured around drug regimens, appointments, behavioural changes, and guaranteeing the safety of the individual in their care. 

You may find yourself smiling politely while feeling emotionally miles away from everyone else. 

Sometimes people avoid mentioning dementia because they don’t know what to say. 

Others quickly change the subject, worried they might upset you. 

This silence may paradoxically intensify carers’ feelings of seclusion. 

Not because others don’t care. 

Rather, it is because the most significant aspects of carers’ lives often stay unspoken. 

The quiet burden of protecting everyone else 

Many carers also become protectors. 

They protect the dignity of the person with dementia. 

They protect children from worry. 

They protect elderly parents. 

They protect friends from feeling uncomfortable. 

Sometimes they even protect professionals from seeing how frightened they really are. 

Unintentionally, carers may become the emotional anchor for those around them. 

Yet who becomes the anchor for the carer? 

This is one reason why emotional exhaustion often develops so gradually. 

Carers may become so accustomed to managing others’ emotions that they lose awareness of their own emotional needs. 

Why does asking for support feel so difficult? 

People sometimes wonder why carers don’t simply say they need help. 

The answer is often intricate and detailed. 

Many fear becoming a burden. 

Some worry they will be judged for struggling. 

Others feel guilty because the person with dementia is experiencing even greater losses. 

At times, carers may be unable to communicate their experiences. 

How do you explain that nothing dramatic happened today… 

…and yet you feel completely drained. The cumulative effect of numerous small emotional demands is challenging to articulate. 

There isn’t one crisis. 

There is rarely a day when carers’ minds are fully at rest. 

Being truly seen 

One of the most powerful experiences a carer can have is not someone solving their problems. 

It is feeling understood. 

Hearing someone say, 

“That sounds incredibly hard.” 

“I can see how much you’re carrying.” 

“You don’t have to pretend you’re coping all the time.” 

Such acknowledgements may provide substantial relief. 

They allow carers to relinquish the need to display constant strength temporarily. 

To breathe. 

To experience a reduced sense of invisibility. Less invisible. 

If this feels familiar 

If you recognise yourself in these words, please know that feeling lonely does not mean you are failing. 

It does not mean you are weak. 

Nor does it mean your relationships have somehow gone wrong. 

Much of what you are carrying is simply difficult for other people to see. 

The emotional work of caring often happens quietly, behind closed doors, and inside your own mind. 

This often-unseen effort merits recognition. 

Carers deserve credit for their contributions. 

And while others may not always fully understand your experience, some people do. 

Sometimes that understanding comes from another carer. 

Sometimes from a counsellor. 

Sometimes from someone who hears without trying to fix anything. 

Carers do not need to undertake the entire caregiving journey in silence. 

Allowing oneself to be seen, even by a single trusted individual, can help reduce isolation. 

Although caring often feels like a concealed journey, it is not meant to be undertaken in complete isolation.