More than a third of people don’t know they have dementia – what to do if you suspect your partner has the condition

Around 36% of people in England with dementia are unaware they have the condition, according to a new report from the Dementia Commission.

The report suggests things health and care professionals can do to improve spotting early signs of dementia. But what can you do if you think your partner has the condition? And how can you broach the topic with them?

If you are worried about your partner having dementia, here are some useful things to know.

Dementia is a term for a range of diseases (for example, Alzheimer’s) which develop over time (months and years) and cause problems with memory and reasoning, communication, changes in personality and a reduction in a person’s ability to carry out daily activities, such as shopping, washing, paying bills or cooking.

Dementia can present very differently in each person, so it’s about knowing what’s normal for your loved one. A person who has always been conscientious and organised starting to unravel is very different from a scatterbrained person just being slightly more scatterbrained.

Grief and stress can affect memory yet not be the start of dementia. But they can also mask the start of dementia: we call this “diagnostic over-shadowing”.

There are also age-related changes to cognition. For example, we take longer to learn when we get older. But a one-off event – no matter how dramatic – is not necessarily dementia. It’s about looking for a pattern of decline.

If you see these changes happen in a short space of time (weeks or days) it is unlikely to be dementia and could be something more serious. This requires urgent investigation by a doctor.

Greatest fear

Dementia is one of the greatest fears of our age. The horror of perceived loss of self can cause people to avoid discussing the issue, discussing it in an unhelpful way (such as criticising or inadvertently humiliating) or discussing it with other relatives, but not the person they are noticing changes in.

Over time, this can cause a lack of trust to develop. Discussing memory problems openly with the person at the point of a memory failure or if they raise the concern is best. Of course, it takes courage and makes us face our own vulnerability.

Sometimes the person will be in denial or lack insight into the memory problems (this can be a symptom of dementia, but isn’t always). If someone raises a concern about their memory issues, I would urge you not to minimise this, as it probably took courage to admit their concerns.

I heard a relative say to my mother: “Oh, you left the pot on the stove. I lost the car in the multistory the other day.” My mother had dementia – the relative did not.

If they are adamant that they do not have concerns, this is harder to deal with. One approach is to say: “I know you are not concerned, but I am concerned and I wonder if you would see a doctor to ease my worries?”

Also explaining that memory problems can at least to some extent have reversible causes means a visit to the doctor to at least rule these out is an important step. It may also be encouraging to say to the person: “If there is something with your memory that will get worse over time, would you want to know?” (Most people answer yes to this).

Seeing a GP

If your partner agrees to visit a GP, it is helpful to prepare by filling in a diary for a week with the kind of memory (or other) problems experienced, what was happening at the time and the effect of the memory failure. This can be shared with a GP to help them to understand the issues.

When people hear even the suggestion of the word dementia, they are faced with the uncertainties of what will become of them, of what they will lose, what they can keep up and where they will end up. These uncertainties are often shared with family members. But research shows that positive aspects of timely diagnosis outweigh fears over time.

At the same time, there are often ongoing stresses to do with memory impairments or confusion. With these stresses, everyday life can be troublesome, family relationships can suffer, and people can find it difficult to be supportive of each other.

Being honest and open is the best policy. Stating that we are in this together, I want to help, let’s meet whatever happens head on, can help. If a person becomes resistant, it may be there is another family member who might better assist the person.