But what happens once the diagnosis finally comes?<\/p>\n
For many families, that\u2019s the moment they fear most. Yet after speaking with Dr Cheryl Johnson, lead geriatrician and head of Brightly\u2019s neuro team, I\u2019m increasingly convinced the diagnosis itself is not the problem. In many cases, it\u2019s the beginning of the solution.<\/p>\n
Why it\u2019s so hard to get diagnosed<\/p>\n
Diagnosing dementia properly isn\u2019t quick.<\/p>\n
That\u2019s because a diagnosis isn\u2019t simply about deciding whether someone has dementia. It\u2019s about understanding what type of dementia it is, what stage it\u2019s at and what that means for treatment, support and planning.<\/p>\n
A thorough assessment can take three to four hours with a person and their family: taking a detailed history, assessing how memory changes are affecting everyday life, conducting cognitive testing, reviewing medications, arranging brain imaging where appropriate and discussing the diagnosis and treatment plan.<\/p>\n
Compare that with the 10 or 15 minutes available in a standard GP appointment and it\u2019s easy to see why diagnosis can be difficult to achieve quickly.<\/p>\n
This isn\u2019t negligence. It\u2019s a specialist process squeezed into a generalist time slot.<\/p>\n
\u201cYou can\u2019t work it out from a memory test alone,\u201d Johnson says. <\/p>\n
\u201cYou need to understand how someone\u2019s functioning, what the family is seeing, what medications they\u2019re taking and how all of that fits together.\u201d<\/p>\n
That level of investigation matters because dementia isn\u2019t a single disease.<\/p>\n
\u201cDementia is an umbrella term,\u201d Johnson says. <\/p>\n
\u201cUnderneath it is a number of different conditions causing the memory decline.\u201d<\/p>\n
Alzheimer disease accounts for around 60-70% of cases, but vascular dementia, Lewy body dementia and frontotemporal dementia can all present differently and require different approaches. <\/p>\n
\u201cSometimes people have more than one type,\u201d Johnson says. <\/p>\n
\u201cSometimes different dementias can look quite similar. That\u2019s why getting the diagnosis right matters.\u201d<\/p>\n
Knowing which condition is present affects medication choices, treatment options and what families should expect over time.<\/p>\n
Just as importantly, a diagnosis establishes the stage.<\/p>\n
A person with mild cognitive impairment needs a different plan from someone with an established dementia diagnosis. Treatment options, support needs and opportunities to intervene are all different.<\/p>\n
Why catching it early matters<\/p>\n
Before dementia develops, many people pass through a period known as mild cognitive impairment, where memory or thinking has changed but day-to-day function remains largely intact.<\/p>\n
Johnson describes it as a critical intervention point. Around 10\u201315% of people with mild cognitive impairment progress to dementia each year. Most don\u2019t.<\/p>\n
\u201cThe challenge for us as clinicians is working out which camp you\u2019re in,\u201d she says. <\/p>\n
\u201cNot everyone who presents with memory concerns has dementia. Some people have nutrient deficiencies, thyroid disorders, sleep apnoea, depression, hearing loss or medication interactions that can look remarkably similar.\u201d<\/p>\n
Research from the United States National Institutes of Health suggests that up to 23% of people assessed for cognitive concerns are ultimately found to have another, often treatable, cause for their symptoms.<\/p>\n
For those in the earliest stages of dementia, timing can also affect treatment options.<\/p>\n
\u201cNew anti-amyloid therapies, already approved overseas, are changing how Alzheimer disease is treated internationally. But they are designed for people in the earliest stages of disease. For this type, if we don\u2019t pick people up early, we\u2019ve missed a boat,\u201d Johnson says.<\/p>\n
She says existing medications can also help. Cholinesterase inhibitors improve or stabilise function in up to two-thirds of people with Alzheimer disease.<\/p>\n
But Johnson is clear that diagnosis does not stop being valuable simply because someone presents later.<\/p>\n
\u201cPeople often think if we\u2019ve missed the earliest window, there\u2019s no point knowing,\u201d she says. \u201cI don\u2019t agree with that.\u201d<\/p>\n
A diagnosis may not change the disease itself, but it can change how a family responds to it.<\/p>\n
It can explain behaviours that have become difficult to understand. It can guide medication decisions. It can help families anticipate what\u2019s coming rather than constantly reacting to it.<\/p>\n
What good care looks like<\/p>\n
For Johnson, diagnosis isn\u2019t the destination: it\u2019s the starting point.<\/p>\n
A good assessment looks beyond a cognitive test score and asks what else might be influencing brain health. Sleep, hearing, medications, vitamin absorption, metabolic and cardiovascular health, diet, exercise and social connection all play a role.<\/p>\n
Once a diagnosis is made, Johnson focuses on building a support plan around both the individual and their carer.<\/p>\n
\u201cIt\u2019s not just about making the diagnosis … It\u2019s about understanding the problem, putting a plan in place and then walking alongside that person and their family.\u201d<\/p>\n
For many families, the first question after diagnosis is: what happens now?<\/p>\n
Johnson says that\u2019s often where traditional dementia care falls short.<\/p>\n
Families are frequently given information about stages, progression rates and what the disease might look like over time. While that\u2019s important, it doesn\u2019t always answer the questions people are asking.<\/p>\n
Dementia doesn\u2019t follow a neat timetable. Two people with the same diagnosis can have very different experiences and trajectories.<\/p>\n
Families want something practical:<\/p>\n
When does driving become unsafe?When does living alone become risky?When should financial decisions or medication management require support?When is it time to activate the enduring power of attorney?<\/p>\n
Those are the questions that determine whether families stay ahead of change or find themselves constantly responding to crises.<\/p>\n
\u201cA lot of our work is helping families understand what matters now, what might matter next, and what signs should prompt a review,\u201d Johnson says.<\/p>\n
Because while a diagnosis explains what is happening, a plan helps prepare for what comes next.<\/p>\n
The emotional, financial and practical strain often falls as heavily on the carer as it does on the person diagnosed.<\/p>\n
In Johnson\u2019s experience, one of the biggest questions is rarely spoken aloud: does this family have the capacity to adapt to what is coming?<\/p>\n
\u201cThe last thing we want is for families to feel they\u2019re on their own,\u201d she says.<\/p>\n
The hopeful part<\/p>\n
A diagnosis opens doors. Sometimes those doors lead to treatment. Sometimes they lead to discovering that dementia wasn\u2019t the problem at all. Often, they simply replace uncertainty with clarity.<\/p>\n
The fear of \u201cthere\u2019s no cure\u201d is real, but it\u2019s the wrong fear. The greater risk is leaving it too long to find out what\u2019s going on.<\/p>\n
5 things to do if you\u2019ve noticed a change<\/p>\n
1. Go straight to a specialist. No referral is needed – a geriatrician or specialist memory service can be accessed directly.<\/p>\n
2. Rule out masquerading symptoms first. Fast-track clinical corrections. Up to 23% of memory concerns are something else entirely.<\/p>\n
3. Act now, not at the next milestone. The earlier the diagnosis, the more treatments stay viable as some only work in early disease.<\/p>\n
4. Plan for the carer too. Their health is part of the plan, not an afterthought.<\/p>\n
5. Build family capacity, not just care. \u201cHow long do we have?\u201d means \u201chow do we make the most of it?\u201d Invest and plan – for both money and support – before you need them.<\/p>\n
Hannah McQueen is the founder and director of Age Brightly. She is also the host of The Next Bit podcast on iHeart Radio.<\/p>\n","protected":false},"excerpt":{"rendered":"But what happens once the diagnosis finally comes? For many families, that\u2019s the moment they fear most. Yet…\n","protected":false},"author":2,"featured_media":492367,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[8831,3021,198,799,796,2245,2893,8455,22137,6098,134,2883,162504,5978,130,111,139,69,131,684,4504,5662,4276],"class_list":["post-492366","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-an","tag-bring","tag-can","tag-dementia","tag-diagnosis","tag-early","tag-fear","tag-getting","tag-hannah","tag-hard","tag-health","tag-hope","tag-mcqueen","tag-might","tag-more","tag-new-zealand","tag-newzealand","tag-nz","tag-than","tag-there","tag-theres","tag-think","tag-why"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/492366","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=492366"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/492366\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/492367"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=492366"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=492366"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=492366"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}