Memory is like a home internet connection: you hardly notice how important it is until the connection starts to cut out. The same goes for memory. It carries us through life, connects the past to the present and helps us plan for the future. It is only when its functioning is disrupted that many realise just how crucial memory is to independence, security and one’s own identity.
However, memory disorders do not always begin as a major upheaval. They can creep into one’s life as small changes that initially seem harmless. Appointments are forgotten, belongings go missing, and even familiar tasks begin to require more concentration than before. At first, forgetfulness may be put down to being busy, stress or simply getting older. Sometimes people spend a long time looking for explanations, as who would want to be the first to suspect a condition that could change the entire course of their life?
Everyday chores can gradually become major challenges. A trip to the shops, which used to be done almost without a second thought, may now require careful planning, a checklist and several checks. You find the carton of milk, but forget the bread. You’ve got the shopping list with you, but reading it at just the right moment feels surprisingly difficult. In the end, the same person might end up going to the shop three times in the course of a single evening.
Calendars, sticky notes and phone reminders become essential tools for everyday life. They act, as it were, as external memories, helping to keep life in order. Loved ones, for their part, may find themselves taking on more and more responsibility for timetables, bills, food shopping and planning shared expenses.
However, the effects of dementia are not always visible to others. A person may appear fully capable, converse fluently and cope with familiar situations, even though organising a normal day requires considerably more effort than before. This is precisely why it can be difficult for an outsider to understand just how much energy managing everyday life can take.
Even familiar surroundings can begin to feel unfamiliar. A person might find themselves on the wrong street or forget where they were heading. The situation can cause confusion, fear and shame. Sometimes it’s easier to blame poor signage than to admit that one’s own internal compass no longer works as it used to.
At home, keys, glasses and the phone sometimes seem to be playing an endless game of hide-and-seek. You might forget what happened in a TV programme by the time the next scene comes round, and the plot of a book might slip your mind before you reach the final chapter. On the other hand, reading a familiar book can offer a new kind of surprise: the story feels fresh again. Here, too, there is a small opportunity for humour, although it does not eliminate the frustration caused by the situation.
Laughter can help us cope with difficult situations, but humour relating to memory disorders must be used with tact. For the person themselves, laughter can be a coping mechanism, whilst joking by an outsider may feel offensive. The key distinction is whether we are laughing together or making the person the object of ridicule.
Dementia can also make social situations stressful. It may be difficult to recognise an acquaintance you meet in the street, even if their face seems familiar. Names slip their minds, the topic of conversation is lost, and it can be hard to follow what the other person is saying. A restaurant booking for a special occasion may turn out to be the right booking – but for the wrong year.
To an outsider, such situations may seem like minor slip-ups. To the person affected, however, they may serve as a reminder that some important aspect of their ability to function has changed. As similar situations accumulate, the person may begin to avoid social gatherings and hobbies. They may fear failure, being misunderstood, or that others will notice their difficulties.
That is why it is important to maintain respect and appreciation when interacting with someone living with dementia. A person should not be defined by their illness. They still have their own history, opinions, sense of humour, feelings and needs. Even if they forget words or the details of events, the experience of how another person treats them can remain meaningful.
Walking alongside a loved one
Dementia is not just one person’s illness, in the sense that its effects extend to the whole immediate circle. Spouses, children, siblings and friends gradually have to learn a new way of being together. Responsibilities that were previously shared equally may change, and a loved one may also become the one who reminds the person with dementia of things, organises matters and ensures their safety.
Love and care do not take away worry or fatigue. A loved one may feel sad that shared conversations, plans and familiar roles are changing. At the same time, they may feel guilty about their own tiredness or about not always being able to respond to situations with patience.
Everyday life can be filled with questions to which there are no simple answers. When is it time to give up driving? When should cherished hunting rifles be handed over? How can we ensure the safety of the home without unnecessarily restricting the person’s independence? How much help is needed now, and how should we prepare for the future?
It is important to be able to discuss these matters in good time, calmly and together. Improving safety must not mean taking away a person’s ability to make decisions about their own life. The aim is to find solutions that enable them to live as independently and meaningfully as possible for as long as possible.
Loved ones also need support, information and the opportunity to talk about their own feelings. No one can stay strong indefinitely, nor do they have to solve everything on their own.
Life does not end with a diagnosis
Dementia changes lives, but a diagnosis does not mean the end of life’s joys, relationships or meaningful activities. People living with the condition can still enjoy music, exercise, nature, culture, the company of friends and experiencing new things. The nature of life may change, but its value does not diminish.
Often, the most important thing is to find ways of doing things where the chances of success outweigh the fear of failure. Music can evoke memories and emotions, even if the words are no longer there. Singing in a choir can bring joy, even if the title of the song or the composer is forgotten. An exercise group can boost confidence in one’s own body, and art or culture can open up new perspectives on the world.
Humour also has its place. It can lighten the mood and help people relate to one another as ordinary people, not just as a patient and a carer. Life can still be full of surprises, laughter and new experiences.
At the same time, it is important to remember that not everyone with a memory disorder is in the same situation. There are many different types of disorders and varying rates of progression, and people’s resources, life circumstances and support needs vary. One person may manage for a long time with familiar daily routines, whilst another may need help at an earlier stage. That is why support must be based on individual needs, not on assumptions about what a person with dementia is or isn’t capable of doing.
Memory associations are much more than just places for leisure activities
In this context, the role of organisations and local memory associations is significant. Their activities provide information and guidance, but above all the opportunity to be treated as a person whose experiences need not be explained.
In a peer support group, you can meet others in a similar life situation. The discussions foster a sense of understanding that is not always found even amongst those closest to you. When someone talks about a similar everyday difficulty or fear, another person may realise that they are not alone in their experience.
The activities organised by memory associations may include exercise, cultural events, choir singing, discussion groups, memory-stimulating activities, lectures on wellbeing and support for family members. The significance of these activities should not be judged solely on the basis of individual meetings or participant numbers. The true impact of a group may be seen in the fact that a person plucks up the courage to leave home, makes a new friend, rediscovers an interest in a hobby, or feels that they are an important part of the community.
The work carried out by organisations can also help prevent loneliness and support people’s ability to function and cope with everyday life. Early support helps those affected by illness and their loved ones to understand the situation, find suitable services and prepare for future changes. When help is received in good time, problems do not necessarily have time to pile up to the same extent as in a situation where a person and their loved ones are left to cope alone.
The value of such work cannot be measured solely by how many participants attend a single group session or how many hours are spent on the activity. A single encounter can give a person the courage to continue with a hobby. A single conversation can ease the burden on a loved one. A single new friendship can bring a sense of community into one’s life, one that includes living with illness.
The significance of preventative and outreach work by organisations thus extends beyond the individual. When people’s wellbeing is supported at an early stage, it may be possible to reduce loneliness, the need for more intensive services and the strain on loved ones. The economic impact of organisations’ activities should be carefully assessed, but it is equally important to recognise their human and social value.
Therefore, cuts to funding for organisations are not just a problem for the organisations themselves. Their effects can be felt in the daily lives of people who are unwell, in the coping capacity of their loved ones, and in the demand for public services. If low-threshold support disappears, the most vulnerable may be left without precisely the help that would enable them to cope better.
A safe everyday life is created together
As dementia progresses, increasing attention must be paid to safety in the home and the wider environment. Routines can make daily life easier, and reminders, clear instructions and appropriate assistive devices can support independent living. At the same time, it is important to recognise situations where extra help is needed, for example with cooking, taking medication or getting about outside the home.
However, safety does not come about solely through locks, alarms or technical solutions. It also stems from a person knowing who they can ask for help and that someone will notice if daily life starts to become too difficult.
We must talk openly about dementia, without shame or stigma. In particular, for those who develop the condition whilst still of working age, the situation may involve financial worries, changing employment prospects and uncertainty about the future. Symptoms are not always recognised, and the person affected may have to explain changes in their functional ability to those around them for a long time before receiving the support they need.
The sooner difficulties can be discussed safely, the better the chances are for the person and their loved ones to find suitable solutions. Openness does not mean that everyone should tell everyone else about their illness. It means the right to receive help without having to feel ashamed of asking for it.
Human dignity remains intact, even as memory changes
Memory is an important part of a person’s life story, but a person is much more than their memory. Their worth does not depend on how many names they can remember, how independently they can function, or how fluently they can talk about their past.
A person with dementia needs to be surrounded by people who know how to pause, listen and give them time. Sometimes it is enough simply to speak calmly, use short and clear sentences, and ensure that the other person has time to follow the conversation. Sometimes the most important thing is simply to be there.
Loved ones must also be given the opportunity to be more than just carers. They, too, have the right to rest, to a life of their own and to support. The wellbeing of the person with dementia and their loved ones is often closely intertwined, which is why it is important to consider them as a whole.
Living with dementia involves, in many ways, letting go and adapting, but it can also mean discovering new ways of doing things, a sense of community and moments of joy. Not everything can be restored to the way it was, nor does everything need to be done in the same way as before.
It is society’s responsibility to ensure that no one has to face this life-changing situation alone. This requires effective health and social services, support for loved ones, and organisations that offer easily accessible help, peer support and meaningful activities.
As fragments of memory fade, the importance of the people around them grows. What is needed then is understanding, patience, a sense of security and the chance to feel part of a community.
Ultimately, the most important question is not how much a person remembers. What matters more is whether they can live a life of dignity, be heard, experience joy and feel that they are part of a community.
Memory may fade, but human dignity does not disappear. And even if a person needs more and more support from others, they still have the right to their own life, to participation and to joy.
