When my stepfather began forgetting little things we all assumed it was simply part of getting older. He would misplace his keys. He would tell the same story twice. Sometimes he would struggle to remember a name. None of us thought too much about it. As time went on we started suspecting first symptoms of dementia.
A few years later I found myself walking a very similar road with my mother. This time the signs were slightly different. There were moments of confusion. Asking for explanations about simple things. Moments where she doubted herself. Small changes in personality that felt difficult to explain. Having already experienced dementia within our family I recognised that something more than ordinary ageing might be happening. By this point, I was beginning to suspect that we were seeing the first symptoms of dementia.
If you are reading this because you are worried about a parent, spouse, relative or close friend, I understand how unsettling that feeling can be. The uncertainty often creates anxiety long before a diagnosis is ever made.
Although the process can feel frightening, knowing what to expect can remove some of the uncertainty. Knowing what to expect helps families feel more prepared and more confident when seeking help.
This guide will hopefully explain the steps involved, from recognising early symptoms to receiving a diagnosis and finding support afterwards.
A gentle reminder before we begin: noticing changes in memory, behaviour or thinking does not automatically mean that someone has dementia. There are many possible causes of these symptoms, some of which may be treatable. This guide is intended to help families understand what the assessment process may involve, rather than to diagnose anyone. If you are concerned about someone you love, speaking to a healthcare professional is the best next step.
One of the most challenging aspects of dementia is that it often develops gradually.
The early symptoms can be subtle and easy to dismiss. Family members may explain them away as stress, tiredness, grief, medication side effects or normal ageing.
Peter claimed there must be something wrong with his meds, whilst later, my mother blamed her symptoms on stress and tiredness caused by being Peter’s primary caregiver.
If you’re looking for a more detailed look at the subtle warning signs families often overlook, I’ve written about them in Early Signs Of Dementia Families Often Miss.
Common early signs may include:
Not everyone experiences the same symptoms and not all memory problems indicate dementia.
Many medical conditions and other factors can affect memory and thinking, including depression, thyroid disorders, vitamin deficiencies, medication effects and some infections. That is why a proper assessment is so valuable.
The one question that every family asks and battles with is whether this is normal ageing or something more serious.
As people age, it is common to occasionally forget names, appointments or where they left an item. Usually the information returns later. With dementia, changes in thinking or memory can begin to interfere with everyday functioning.
For example:
Normal ageing might mean forgetting a neighbour’s name temporarily. Dementia may involve forgetting who the neighbour is altogether.
Normal ageing may involve occasionally misplacing keys. Dementia might involve putting keys in a shoe in the cupboard and having no recollection of doing so.
The key difference is whether memory and processing difficulties are interfering with everyday life or not.
This can be one of the hardest stages.
Many people experiencing symptoms do not recognise them. Others may feel embarrassed, frightened or defensive.
When my mom first raised concerns about Peter’s memory, she had to choose her words carefully. A direct confrontation would likely have caused distress.
Instead she focused on specific examples. She talked about missed appointments and forgotten conversations rather than using labels like dementia or Alzheimer’s disease.
Gentle conversations tend to be more productive than arguments. Approaching the topic with compassion rather than criticism often encourages cooperation.
You don’t need to convince someone that they have dementia. The goal of the first conversation is simply to open the door to getting the changes properly assessed.
For most families the journey begins with a visit to a general practitioner. This appointment provides an opportunity to discuss concerns and begin investigating possible causes.
Before attending, it can be helpful to make notes about:
Keeping a diary for several weeks can provide valuable information for healthcare professionals. If possible, take someone who knows the person well to the appointment. They may be able to describe changes that the person themselves hasn’t noticed or doesn’t remember.
The more specific examples you can provide the better.
The GP will usually ask questions about memory, thinking abilities, behaviour and daily functioning.
Questions may include:
The healthcare professional may also assess general physical health because several medical conditions and medications can cause symptoms that resemble or contribute to cognitive problems.
One thing that surprised me during my family’s experience was how many other conditions needed to be ruled out first.
Depending on the person’s symptoms and medical history, blood tests may be used to look for other conditions that could be contributing to the symptoms, such as:
These conditions can sometimes produce symptoms similar to dementia, so treating the underlying issue may significantly improve cognitive function.
A key part of the dementia diagnosis process involves cognitive assessments.
These tests evaluate:
The tests are not designed to catch people out. The result is considered alongside the person’s medical history, symptoms and everyday functioning rather than being used on its own to diagnose dementia. They simply help healthcare professionals understand how the brain is functioning.
Some questions may seem unusual for example, a person may be asked to remember words, draw a clock, identify objects or answer simple questions about time and place.
While these assessments can feel intimidating they provide valuable information that contributes to an accurate diagnosis.
If concerns remain after the initial assessment, the person may be referred to a specialist. Depending on the circumstances, this could include:
Specialists have additional expertise in diagnosing different forms of dementia and related conditions. This stage often involves more detailed assessments and discussions with family members.
Hearing that a brain scan may be needed can sound frightening, but not everyone who is being assessed for dementia will need one. When imaging is recommended, it can help doctors look for changes in the brain and rule out other possible causes of symptoms.
Depending on the circumstances, a healthcare professional may request:
Brain imaging helps identify structural changes and can assist in distinguishing between different types of dementia. Scans may also reveal other conditions such as strokes, tumours or hydrocephalus.
The imaging process itself generally causes little discomfort although some people feel anxious in enclosed spaces.
For many families this is the most emotionally difficult stage. The period between assessments and receiving results can feel endless.
Questions race through your mind.
During Peter’s, and then later my mother’s assessment process, I found myself swinging between hope and worry almost daily.
This emotional rollercoaster is extremely common. Seeking support from trusted friends family members or support groups can make a significant difference during this period.
For many families, a dementia diagnosis may confirm concerns they have already been carrying for some time. Most families have already sensed that something is wrong. Even so, hearing the words spoken aloud can be deeply emotional.
Some people feel relief because they finally have answers whilst others experience sadness, fear, anger or disbelief. Many experience all of these emotions at different times.
Healthcare professionals will explain:
Do not hesitate to ask questions. Taking notes during appointments can also be extremely helpful.
Dementia is not a single disease. It is an umbrella term describing symptoms caused by different conditions.
Common forms include:
Alzheimer’s disease is the most common cause of dementia. Memory problems are often an early feature, although symptoms can vary from person to person.
Often linked to reduced blood flow to the brain and previous strokes.
May involve changes in attention and alertness, visual hallucinations, movement difficulties and sleep problems.
Often affects personality behaviour and language before memory.
Understanding the specific diagnosis helps families plan appropriately.
Life does not stop after a diagnosis. Many people continue enjoying meaningful, active lives for years. The focus shifts towards support planning and maintaining quality of life.
Areas that may need attention include:
The exact priorities will depend on the person’s diagnosis, circumstances and wishes, so there is no need for a family to try to tackle everything at once.
Addressing these matters early allows the person living with dementia to participate in decision-making.
As dementia progresses, safety becomes increasingly important. Simple changes can reduce risks significantly.
Examples include:
Many of these adjustments are inexpensive but highly effective.
If you’re ready to look more closely at the home itself, I’ve written a separate guide to Creating A Safe Home For Someone With Dementia. It walks through the different areas of the home and the practical changes that can make everyday life safer and easier.
During both my stepfather’s and mother’s journeys, I noticed how much attention focused on the person with dementia whilst caregivers often became exhausted.
Family caregivers frequently experience:
Supporting a loved one with dementia can be rewarding but it can also be demanding. Accepting help is not a sign of failure. Respite care, support groups and professional assistance can provide much-needed relief.
No family should have to navigate dementia alone.
Many organisations offer:
Connecting with others who understand the journey can provide reassurance and practical advice. Sometimes the greatest comfort comes from speaking with someone who truly understands what you are experiencing.
When you are worried about someone you love, the internet can be both helpful and overwhelming. There is a huge amount of information available, but not all of it is accurate or written with families in mind.
I found it much more helpful to use a few reliable organisations for information about symptoms, diagnosis and support, rather than trying to make sense of everything I found online.
The National Institute on Aging provides clear information about dementia symptoms, types and diagnosis and the differences between dementia and normal age-related changes.
The NHS also has a useful explanation of what happens during the assessment process, including the types of questions, cognitive tests, blood tests and scans that may be involved. It stresses that there is no single test that can diagnose dementia.
For South African families, DementiaSA is particularly useful because its support is geared towards our local situation. It provides information, counselling and support for families and carers, as well as a national helpline on 0860 MEMORY (0860 636 679).
Another South African organisation worth knowing about is the Association for Dementia and Alzheimer’s of South Africa (ADASA), which provides information, counselling, family support and support groups for people affected by dementia.
When dementia enters a family it changes life in ways few people expect.
My experiences with both my stepfather and my mother taught me that uncertainty can be one of the hardest parts of the journey.
The diagnosis process may feel overwhelming at times but each step brings greater clarity.
Seeking help early creates opportunities for treatment planning, support and improved quality of life.
If you are currently concerned about someone you love, trust your instincts. Keep notes. Ask questions. Reach out for professional guidance.
A diagnosis does not define a person. Your loved one is still the same individual with a lifetime of memories experiences relationships and stories.
Compassion, patience, understanding and support can make an enormous difference as families navigate this path together.
Write down the changes you have noticed and, where possible, give specific examples. Include when you first noticed them, whether they are becoming more frequent and whether they are affecting everyday activities.
It can also help to make a note of changes in mood, sleep or behaviour, recent illnesses, existing medical conditions and all prescription medicines, over-the-counter medicines and supplements.
A simple diary can be surprisingly useful because it gives the healthcare professional a clearer picture than simply saying, “Mum seems more forgetful lately.”
If your parent is comfortable with you going, it can be very helpful. Someone who knows them well may remember changes that they have not noticed themselves or may have forgotten to mention.
You can also help remember what the healthcare professional says and make a note of questions or next steps. NHS guidance similarly recommends having someone who knows the person well at the appointment when possible.
There isn’t one standard test that gives a dementia diagnosis.
The healthcare professional will usually ask about the person’s symptoms, when they started and how they are affecting everyday life. They may review medical conditions and medication, carry out a physical examination and arrange blood or urine tests to look for other possible causes.
Cognitive or memory tests may also be used to assess areas such as memory, concentration, language and orientation. Depending on the circumstances, the person may then be referred to a specialist for further assessment and possibly brain imaging.
No. There is no single test that can diagnose dementia.
A diagnosis is based on several pieces of information, which may include the person’s medical history, symptoms, everyday functioning, cognitive testing, physical examination, blood tests and sometimes brain scans. Cognitive tests and brain scans are not normally used on their own to diagnose dementia.
Yes. Memory and thinking problems can have many possible causes, which is one reason a proper medical assessment is so important.
Depending on the person, possible causes may include depression or anxiety, infections, thyroid problems, vitamin deficiencies, medication side effects and other medical conditions. Some causes may be treatable.
This is also why it is best not to assume that memory loss automatically means dementia.
There is no fixed timeframe. Some people may receive an answer within a few weeks while others need several appointments, investigations or specialist assessments and the process can take considerably longer.
The waiting can be frustrating, particularly when your family already feels that something is wrong. Try to think of each appointment as another piece of the puzzle rather than expecting one visit to provide every answer.
The next steps depend on the type of dementia, the person’s symptoms, their health and their individual circumstances.
Your healthcare team can discuss treatment and support options, while families may also need to think about practical matters such as healthcare planning, finances, legal documents, driving, home safety and future care.
You don’t have to sort everything out immediately. Give yourself time to absorb the diagnosis and deal with the most pressing things first.
Sometimes dementia can be diagnosed when symptoms are still relatively mild. Getting an accurate diagnosis can help explain what is happening, provide access to appropriate treatment and support and give the person and their family an opportunity to plan ahead.
That doesn’t mean every memory lapse needs to become a source of panic. It simply means that persistent or noticeable changes deserve to be properly assessed.
If you are worried about changes you have noticed in yourself or someone you love, don’t try to diagnose dementia from an online checklist or article. Use the information as a starting point for a conversation with a healthcare professional.
Once you begin noticing changes in memory and everyday routines, a few simple items can sometimes make life a little easier. These aren’t medical treatments and they certainly aren’t necessary for everyone. Think of them as practical tools that may provide a little extra reassurance or independence.
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A large digital clock displaying the day, date and time can be particularly useful when someone is becoming confused about what day it is. A clear display can provide a simple visual reminder without requiring someone to ask repeatedly.
A medical alert pendant can provide an additional layer of reassurance for someone who lives alone or may be at risk of becoming disorientated or falling. The most appropriate system will depend on the person’s circumstances and ability to use it independently.
If smaller buttons or complicated menus are becoming frustrating, a telephone with large, clearly marked buttons can make calling family members easier.
This can be especially useful for someone who is still living independently but finding modern smartphones increasingly difficult to navigate.
A digital photo frame loaded with familiar photographs can bring something lovely into an otherwise unfamiliar or confusing day. Family photographs may also provide opportunities for conversation and connection.
A clearly labelled medication organiser may help some people keep track of medicines, but this needs a little caution. Not everyone with memory problems should manage their own medication, particularly if there is a risk of taking the wrong dose or forgetting whether medication has already been taken.
If medication is becoming difficult to manage safely, speak to a healthcare professional or pharmacist rather than relying on an organiser alone.
Motion-activated night lights can provide gentle illumination when someone gets up during the night, potentially making trips to the bathroom safer and reducing the need to search for a light switch in the dark.
Looking for more practical ideas? I’ve put together a separate guide to Home Safety Products For Your Loved One With Dementia where I look more closely at the practical products that can make a dementia-friendly home safer and easier to manage.
If this guide has helped you, please consider sharing it with a friend or family member who is caring for someone living with dementia. Small changes can make a remarkable difference and your share could help another family feel more confident and supported.
You may also enjoy:
Creating a safe home for someone with dementia
Home safety products for people with dementia
The 7 stages of dementia explained in plain English
Early signs of dementia families often miss
Things elderly parents need that money can’t buy
Important family documents: The best way to organise them
What to keep when you can’t keep everything
Signs you’re healing from grief even if it doesn’t feel like it
Life has a way of taking us down roads we never planned to travel. Some are difficult, some are beautiful and many are both at the same time. If this season has felt heavy, I hope you find a place that lets you breathe a little deeper, smile a little more easily and remember that hope has a wonderful habit of finding us when we least expect it. Until next time, travel gently and be kind to yourself.
Until next time,
Sharon 🌼
