Mrs Schmugge, do people with dementia still know who they are?

We meet Barbara Schmugge in a classroom in the Toni-Areal in Zurich, where the ZHAW's Department of Applied Psychology is located. The walls are grey and bare; large windows offer a view of the green inner courtyard. The psychologist appears concentrated and lively. She laughs as she holds the small paper towel she received from the photographer to wipe away shiny spots on her face. However, the tissue is not used.

Mrs Schmugge, let's start with an example: an old woman with dementia sits in front of a flower pot and speaks to it in French. In her younger years, the woman worked as an au pair in French-speaking Switzerland, but since then she has hardly spoken any French. What does it mean for a child to experience their grandmother like this?

Perhaps it is alienating, especially when the grandmother sees it for the first time. At the same time, the grandmother's behaviour is a mystery - like so many other things in a child's life. How the parents react and deal with the situation is very important. Parents are role models. How they live and organise their relationships shapes the child. They can explain to the child that «Grandma» speaks French because it reminds them of a world they used to live in. This has a completely different effect on the child than if the parents avoid the child's questions and fend them off. However, it could become difficult if the grandmother suddenly displays such alienating behaviour.

Do such sudden changes often occur during the course of dementia?

This depends on the type of dementia. In Alzheimer's disease, the most common form of dementia, the progression is usually like this: Gradual at first, followed by a sudden onset of pronounced symptoms. In this phase, the changes can actually be drastic. In the third stage, the cognitive changes become less extreme again.

«How parents live their relationships - even with a grandmother with dementia - shapes the children.»

When counselling relatives, have you ever experienced a grandchild no longer feeling comfortable with their grandfather who has dementia?

Yes, that happens. And then it is certainly also the responsibility of the parents to see whether the grandfather can still look after the child. However, I assume that children are not so bothered by these changes in the grandfather's or grandmother's behaviour. We adults are the ones who are afraid of this illness.

Back to the reminder: Is access to people with dementia facilitated by memory?

Yes, and the opportunity to talk about memories is also used in Alzheimer's activation therapy. My practical experience shows that positive memories tend to come up in non-traumatised people when they become demented, whereas these events can dominate in people with traumatic experiences (e.g. war trauma). This is very stressful because it is difficult to have a therapeutic effect. Memories usually have an emotional connotation. They bring up content that is associated with strong feelings.

So can it be useful to talk to a grandfather with dementia about his memories?

Yes, but the attitude should be positive. Mum or dad shouldn't say: 'Oh, granddad forgets everything anyway, what's the point of rummaging through old memories. If there is an openness, a genuine interest in the father's and grandfather's past, then this can certainly enrich the relationship between the generations. Children often love hearing stories from the past. As dementia means that hardly anything new can be absorbed or stored, it is assumed that this frees up more capacity for memories.

People with dementia experience increasing changes in their cognitive abilities. Their memory no longer functions properly and their thinking and language are affected. What about the emotionality of those affected?

Emotionality and sensuality remain the same. However, the emotions change to the extent that they are often expressed in an uncontrolled manner because cognitive control no longer works. As a result, feelings and sensuality can become more prominent. People with dementia also like scents, colours and music. Many people with dementia also live very much in the moment - like children. This ability to live in the moment can be a resource in the relationship with relatives, especially grandchildren. Grandmother and grandchild enjoy the moment, nature, etc. together. However, the grandmother with dementia is probably no longer able to take responsibility for the grandchild.

«The contents that are associated with strong feelings are recalled.»

It is often a very demanding task for relatives to care for a family member with dementia.

That is absolutely the case. And unfortunately, too few relatives of dementia sufferers still take advantage of support for themselves. In my counselling sessions, I notice time and again that for relatives, dealing with dementia is above all important work on themselves. After all, you can no longer advise the grandfather affected by dementia what he should do. But the relatives have the opportunity to acquire knowledge about the disease and, above all, how to deal with it.

When do relatives reach their limits?

Often when your own father or mother no longer recognises you. Or when caring for them becomes too demanding. Many mothers and fathers who have a parent with dementia find themselves in a demanding and stressful phase of life anyway. They have to juggle work, bringing up children and caring for a parent with dementia. They are often up to their neck in water. This makes it all the more important for them to get support and advice on how to deal with a relative with dementia.

What are the benefits of such counselling?

A lot can be changed through competent counselling. Relatives often suffer from feelings of guilt precisely because they are overwhelmed - and it is very important to talk about this, not to bottle up this frustration and aggression or even take it out on the father or mother with dementia.

What is still stopping relatives from seeking this help?

There is often a fear that the person with dementia will not feel comfortable outside the home, for example in a care home. However, it has been discovered that people with dementia feel much better when they are not alone. A home in Hamburg was remodelled a few years ago and all residents had to temporarily sleep together in one large room. The result was that the residents felt much more comfortable than in their single rooms. They needed far fewer sleeping pills because they were less anxious. After all, there were others in the room that they could hear, see and smell! This had a very calming effect on the residents. It really can be better for everyone to place an elderly person with dementia in a specialised home and visit them very often than to overburden themselves by continuing to care for them at home.

Advice books say that you shouldn't argue with people with dementia.

Yes, because arguing is an act between two people who are at roughly the same cognitive level. When a person with dementia argues with a person without dementia, they always lose. This manifests itself in that the person with dementia either says nothing at all or always says the same thing. Some start shouting or displaying stereotypes.

Can you give us an example of this?

As a young psychologist - it was my first job in a clinic - I wanted to pick up a woman with dementia on the ward to test her. I asked her to come with me. But the woman refused and kept saying: No, leave me alone, I have to cook now! I persuaded the woman. To no avail. The ward orderly, who had been watching all this, intervened by saying to the patient: "Yes, that's fine about the cooking. I'll do it for you today. You can go with Mrs Schmugge. And the woman followed me, completely reassured.

Isn't that manipulation? After all, this carer tricked the woman ...

No - this is called validation. You try to understand what is going on emotionally in the person with dementia. And often they are stuck in a pattern that they can no longer get out of themselves. They then really get themselves into it. It's about recognising and enduring the person's emotions, but cognitively you take the lead; precisely because the person with dementia can no longer do this. Emotionality should always be taken seriously, not least because the cognitive approach, which is increasingly dwindling, no longer works.

«Relatives should not stop at seeking help.»

Do people with dementia still know who they are?

The identity of a person with dementia changes dramatically. People suffering from Alzheimer's dementia very quickly lose insight into themselves. An estimated 70 per cent do not even realise that they have dementia in the early stages. And nobody realises it later on. I can only repeat myself: The illness really is a huge challenge for relatives. However, I would also say that if those around them can deal with this change well, it will reduce the severity of the illness. That's why I think it's very important that relatives seek advice and make sure they stay balanced themselves, so that they take care of their own relaxation, cultivate hobbies and allow themselves to be relieved.

When should family members contact their family doctor to have a suspected case of dementia investigated?

This varies. On average, it takes around three years after the first signs have been recognised by relatives before clarification takes place. It is often drastic changes that lead people to seek medical help. For example, the grandmother is suddenly no longer able to organise her everyday life. She no longer focusses on herself, her interest in other people wanes. Or she cooks the same meal every evening, whereas she used to eat a very varied diet. In any case, it is always important to carry out a really thorough assessment.

What are the main signs of dementia?

When memory and orientation have deteriorated considerably. For example, if someone can no longer find their way home from the supermarket. Increasing linguistic deficits such as pronounced word-finding difficulties can also be signs of dementia. Or someone becomes very clueless. For example, they no longer know what certain objects they used to use are for.

You mentioned that at a certain stage in the course of the disease, dementia sufferers do not even realise that they are ill.

Yes, because (self-)reflection can no longer take place. How we see ourselves is above all a cognitive achievement. With dementia, this image of ourselves is lost. However, I observe time and again how happy people with dementia can be. This is the case when relatives deal well with the illness. People with dementia react very sensitively to moods and vibrations. They realise when we are not being genuine and are pretending something. You can observe that very well. Relatives therefore need to be very mature and reflective.

What fascinates you about working with people with dementia?

The unadulterated! And I also believe I have a connection to them. I've been able to follow the development of this whole specialism. I really miss it when I'm not counselling people in my practice who are somehow involved with dementia.

About the person:

Dr phil. Barbara Schmugge is Professor and Head of Studies at the ZHAW - Department of Applied Psychology and Gerontopsychologist. In her private practice, she advises relatives of dementia sufferers and care teams, among others.