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.
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.
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.
The good news is that understanding the dementia diagnosis process can remove some of the fear. 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.
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.
Common early signs may include:
Not everyone experiences the same symptoms and not all memory problems indicate dementia.
Many medical conditions can affect memory and processing things including depression, thyroid disorders, vitamin deficiencies, medication interactions and 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. In the case of Dementia, daily functioning is affected.
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.
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.
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:
Physical health will also be assessed because many medical conditions can mimic dementia symptoms. Blood pressure, hearing, vision and general health may all be reviewed.
One thing that surprised me during my family’s experience was how many other conditions needed to be ruled out first.
Doctors often request blood tests to check for:
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. 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, a referral may be made to a specialist which may 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.
Many people worry when they hear brain scans are required but in reality, these scans are usually painless and straightforward.
Doctors 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.
A dementia diagnosis rarely arrives as a complete surprise. 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:
The most common form of dementia where memory loss is often one of the earliest symptoms.
Often linked to reduced blood flow to the brain and previous strokes.
May involve hallucinations, movement difficulties and fluctuations in alertness.
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:
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.
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 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.
