Dementia: don’t wait for crisis to start a conversation
It often starts with something small.
A forgotten appointment. That question that gets asked several times. A familiar recipe that suddenly seems difficult to follow. When someone you love who has always been easygoing becomes unusually anxious, suspicious or irritable.
Often, families know something has changed before they know what that change actually means.
We tell ourselves that Mum is simply getting older, that Dad has always been forgetful, or that perhaps they are tired or stressed. And occasional forgetfulness can, of course, be part of normal ageing.
But sometimes those changes begin to form a pattern.
September is World Alzheimer’s Month, and this year’s theme, “The Earlier You Know, The More You Can Do. A Diagnosis Matters”, gets to the heart of how difficult it can be to acknowledge that something may be changing, particularly when you are frightened of what the answer might be.
One of the common misconceptions about dementia is that it is simply about forgetting things. Memory loss can certainly be a symptom, but dementia presents in many different ways.
Families may notice changes in judgment, organisation, or the ability to manage familiar tasks. Sometimes the first noticeable changes are emotional or behavioural. They may be subtle, or sometimes a marked change in personality. A person may become more withdrawn, anxious, agitated or suspicious. Depression, changes in sleep and hallucinations can also occur.
But importantly, not every change in memory, mood or behaviour is dementia.
There are many reasons an older person may seem different. Physical illness, medications, depression, grief, loneliness, neurological changes and other health conditions can affect how someone thinks, feels and behaves. Getting a formal assessment isn't about assuming someone has dementia. It is about trying to understand what is happening rather than simply putting a change down to age.
I know getting to that point isn't always easy. Families may have been noticing changes for months before anyone raises the subject, partly because no one wants to frighten or upset the person they love.
The person experiencing the changes may not recognise them, or may not want to discuss them. Families may worry about what a diagnosis could mean. And sometimes people avoid seeking answers because they believe that, without a cure, there is little point in knowing.
For some, avoiding care because of fear of a potential diagnosis may prevent help with addressing modifiable or reversible contributors to the changes. And for others, there can be real value in having an accurate dementia diagnosis.
It can help to explain changes that may have been confusing or upsetting. It can help to determine what treatment and support may be appropriate and give families time to learn more about what to expect. Perhaps most importantly, it can allow the person receiving the diagnosis to be involved in conversations and decisions about their own health, care and future. This is one of the reasons this year's World Alzheimer's Month campaign is placing such an emphasis on earlier diagnosis.
As a geriatric psychiatrist, my role is not only to consider cognitive symptoms. People living with dementia may also experience depression, anxiety, grief, agitation or other emotional and behavioural changes. These can be distressing for the person experiencing them and can be extremely difficult for families to understand and manage.
Good dementia care has to look beyond memory. It means considering someone's mental and physical health, their relationships and independence, and, importantly, who they are and what matters to them.
Of course, a diagnosis of dementia rarely affects just one person. Dementia also has a profound impact on families and caregivers.
I have worked with many families who are trying to support an older relative while also managing jobs, children, finances and their own relationships. Caregiving can continue for years, and it is not unusual for family members to experience anxiety, depression, guilt or exhaustion along the way.
Supporting the person with dementia and supporting the people around them really do go hand in hand.
No single professional or organisation can provide everything a family may need. Clinical care can help with assessment, psychiatric symptoms, treatment and emotional wellbeing. Families may also need practical information, education, social connection and the opportunity to speak with other people who understand what they are experiencing.
Here in Bermuda, we are fortunate to have Dementia Bermuda, which provides dementia-specific programmes, education, resources and support for people living with dementia and the families caring for them.
For families who are beginning to notice changes in someone they love, my advice is not to try to work out the diagnosis yourselves. Instead, pay attention to what you are seeing. Is it an isolated incident or are you noticing a pattern? Understanding the timeline of symptoms is valuable. Is the change beginning to affect everyday life? If you are concerned, speak with the person and with a healthcare professional.
You don't have to wait for a crisis to start that conversation.
Noticing that something has changed does not tell us what is wrong. But it can tell us that it is time to ask.
And asking earlier gives us more time to understand what is happening and, where needed, put the right treatment and support in place.
• Elizabeth Hathaway is a board-certified psychiatrist at Solstice with specialist expertise in geriatric psychiatry and psychodynamic psychotherapy. Her work includes supporting older adults and families navigating later-life mental health concerns and the behavioural and psychological symptoms associated with dementia
