Living with Dementia

The phrase ‘living with Dementia’ is often used in respect of a person with a Dementia diagnosis. Whilst in some ways this is a true description for them; it is a much more accurate description of the people that live with them and/or the carers of that individual.

There is a television advert which follows the format:

• Mum died when …
• Mum died again when …
• Mum died a third time when …

The people (often immediate family) who live in the same house as the individual (e.g their wife and children) have to experience the loss of the person they love much earlier than those outside that immediate household circle.

They have to live with all the early symptoms. All the indicators that the individual does not want to accept or acknowledge, their refusal to seek medical attention (even though the earlier the diagnosis the better it can be managed for all) because the individual is too proud to accept their may be something wrong or are scared if that diagnosis or are not ready to accept what the outcome could be or a combination of these and/or other reasons.

Consequently, the family/those that live with the individual are unable to access the help available to those where the individual has a formal diagnosis. Without that same level of support, these household members have to experience the loss of the person they love as their personality and behaviour change, whilst the individual is still able to mask it for those not living with them.

The household have to put up with the individual’s meltdowns, temper tantrums, selfishness, criticism, sarcasm, facetious comments, denials, lack of acceptance from the individual of what the individual is doing.

The family/household try to persuade the individual to get checked out medically and get rebuked and told by the individual that the household are critical and “attacking” the individual. The household offer help to the individual, who has forgotten how to do certain processes or what equipment to use, in a tactful way such as “have you tried …” or “maybe this one will help” and they get told sarcastically that ‘of course it has to be that household member’s way’ and that the household member is critical and telling the individual what to do. This is also the response from the individual if they are reminded of something they have forgotten to do – even if worded in a way like “you said you were planning to do … is that still the plan?”

As well as coping with all of this, the household are grieving the loss of the individual because they are already no longer the same person.

On top of this, the individual is still able to manipulate and mask. Therefore, when they are seeing medical professionals they are able to “put on an act” and go into “host mode¹“, when seeing family/friends outside of the household they are able to mask the changes in themselves and in their personality and behaviour for long enough that the true state of the individual is hidden from all but the household.

The household are not believed – even though they are the ones that see and suffer the changes and the symptoms in the individual. They are left to grieve, live with and care for the individual without support. It takes longer for the individual to get a formal diagnosis as it is not until the dementia is so progressed that is blatantly obvious even to strangers that it is obtained. It is so often not until the official diagnosis is obtained that the family/household can access any help and support by which time the trauma and damage this situation has on a household has already been caused.

The individual, whilst still loved and looked after, has (in the form of the television advert) already died over and over and over again to the household by the time getting a diagnosis has become possible. The household are having to cope with worsening symptoms and the negative parts of the individual’s personality, they are trying to provide for the individual’s needs whilst experiencing a barrage of negativity and insults from the individual and, of course, whilst the individual is taking out what is happening to them on their household.

It is actually the immediate family/household that are living with Dementia. More recognition and support is so much needed. More acceptance of the symptoms by the individual and realising that a diagnosis is not a label, it is not a weapon against them, it is not derogatory or negative or a stigma is essential. If that individual broke their leg they would seek medical help, get a diagnosis, be given treatment that helps the condition and support would be given to everyone it affects so that they can all continue to lead as normal a life as possible. If people viewed Dementia symptoms with the same acceptance they view a broken leg i.e. accepting those symptoms, getting the medical diagnosis, treatment and support, then there would be more support both for those with and for those caring for those with that illness. And not only that but the help and support would be in place before it is too late and before love turns to hate!

No man is an island,
Entire of itself;
Every man is a piece of the continent,
A part of the main.

If a clod be washed away by the sea,
Europe is the less,
As well as if a promontory were:
As well as if a manor of thy friend’s
Or of thine own were.

Any man’s death diminishes me,
Because I am involved in mankind.
And therefore never send to know for whom the bell tolls;
It tolls for thee.

John Donne

No one is an island. Dementia does not just affect the individual but their family/household and then as time goes on the ripples spread till it is affecting the wider family, everyone they interact with, the community and so it goes on and on and on and on. Remove the stigma, change the viewpoint, change the world.

1. When a person with dementia temporarily hides their symptoms and acts completely normal, clear-headed, and charming in front of doctors or visitors. ↩︎