How much do people with dementia understand?

Today’s guest blog is written by Dr Lauren Rooney, a clinical psychologist working with older adults in Dorset. She has a particular interest in working with those with dementia, and works on an inpatient ward for people with severe dementia and challenging behaviours.

Very frequently, people who have a loved one with dementia get very upset, confused, frustrated and hurt by how their loved one is acting. It can be very painful when their loved one doesn’t seem to remember them anymore but still remembers less significant things. They may find it hard to understand that the person with dementia remembers something sometimes, but then forgets it at other times.

A younger person touching an older person who is holding a stress ball

Dementia is emotionally fraught for the people who have it, and for their loved ones

Dementia is an umbrella term for any cognitive problem which will continue to worsen over time [i]. There are many different types, but the most common four are Alzheimer’s disease, vascular dementia, frontotemporal dementia and dementia with Lewy bodies (as well as “mixed dementia” which can be a combination of two or more types), and each of these varies in their presentation [ii]. Today, I’m going to talk about the most common form of dementia in the UK – Alzheimer’s disease.

When talking about dementia, it’s common that someone says, “They’re just going backwards and turning into children”. However, dementia has a non-linear pattern and is not the reverse of child-adult development [iii]. Similarly, I often hear the idea that if those with dementia can’t remember who people are or what they are doing, they must almost be like empty vessels, living minute to minute. However, when I began to work with people with dementia, I soon realised memory loss is more complex than this.

One way we can understand this disconnect in what people do and don’t remember is by using the “Bookcase Analogy” [iv] [v]. This analogy is based on research [vi] which indicates there are many memory systems, particularly an explicit system (where we can remember things and word them verbally) and an implicit system (where we can capture the emotions and feelings about memories or interactions, or how to physically do things, but not words).

Suppose memory is like two full bookshelves. One bookshelf, the explicit system, contains all the verbal memories for things. The other bookshelf, the implicit system, contains all the emotional memories. The memories have been put onto the bookshelf from the bottom up, with childhood memories at the bottom and more recent memories at the top. Dementia has come along and it’s shaking both bookshelves. The bookshelf for emotional memories is much better built (maybe it’s been built by a master builder who knows how to do fancy joints) whereas the bookshelves for verbal, episodic or factual memories was bought at Ikea and put together by me without reading the instructions properly. As you’d expect, if you shake the bookshelves, all the books start to fall off, usually from the top shelves first. This means memories for more recent things (like what we had for lunch yesterday) fall out and are lost, but earlier memories are intact. As more and more books fall out of the ‘explicit’ shelves from Ikea, piecing together memories which remain becomes harder. However, because the implicit, emotional bookcase is doing comparatively better, people with dementia may still be able to feel the world – for example, they might not be able to say who someone is, but they still feel the strong emotions of comfort, security and safety when with someone they know.

People with dementia are not empty vessels: being with a loved one can still provoke strong positive emotions, even if those emotions cannot be verbalised

Obviously, the bookcase analogy simplifies what’s going on, and it can be very hard to measure whether it is “true” or not when those with dementia may not be able to find words to explain their experiences. Like much that we “know” about dementia, this information is often based on observations by those who care for people with dementia and “hard” evidence from scans and physiological data in combination. I’m unsure why there is limited research into dementia – maybe it’s because the money is all being channelled into prevention rather than improving quality of life, or maybe it just isn’t “jazzy” enough for people to want to research. (I used a lot of quote marks in this paragraph!)

So, now we know those with dementia are not “empty vessels”, let’s explore what we know about how memory works in dementia.

Memory for others

People with dementia still have a need to be with people they are attached to who are supportive and caring [vii], but this is sometimes expressed in confusing ways. For example, many people with dementia may look for their parents as a way of reducing their anxiety [viii]. Using our bookshelf analogy, we can understand this as people with dementia wanting someone around who is caring and familiar to meet their need for someone safe (implicit memory) but they may express this as a need for a parent because their memories for more recent loved ones have fallen off (explicit memory). Jones and Miesen viii theorise that when they are calling or searching for a parent, they are actually asking for a loved one.

Those with dementia often communicate their emotions through behaviours [ix]. When those emotions are negative, it’s understandable that the person may be agitated. Even when someone does not explicitly remember their family, their agitated behaviours typically reduce when with them, indicating implicit recognition [x].

Parent and adult child laughing together

Being with family members can be comforting for people who have dementia

Memory for the past

Agitation is also reduced when people with dementia are played their preferred music from the past [xi]. This has also been seen when people with dementia are played music from their past, and can suddenly remember the words and tunes [xii]! Interestingly, even when people with dementia can’t name songs they’d like to listen to, music from their pasts still works to soothe and stimulate people with dementia. The implicit memory is helping them remember this information. Some people who could play an instrument before developing dementia can still do so, and can even learn new tunes [xiii].

Listening to music that is familiar from earlier on in life can help people with dementia feel better (much like the rest of us!)

Memory for places

It’s easy to think those with dementia may not know where they are at times, particularly if they talk about believing they are at school when in fact they’re in hospital. This is a phenomenon called confabulation and is actually just a way for those with dementia to try and make sense of what’s going on (think about our bookshelf analogy – the book which says I’m in hospital has fallen off, so we look at the other books and assume big building, lots of staff, I must be in school). However, we also know that despite the explicit memory saying I’m in school, those with dementia have a preserved implicit memory for familiar places [xiv].

Enjoyment of life

People with dementia may not be able to communicate well verbally, or understand verbal information, but they can still have meaningful emotional communications and enjoy experiences of playfulness, emotional intimacy and connection [xv]. Quality of life can also be preserved, with carers and those with dementia agreeing that there are specific domains which need to be worked on to give the person with dementia and their families a sense of satisfaction [xvi].

Dementia is a very challenging, emotive disease. It is frightening to those who have been diagnosed and their loved ones, and can leave everyone feeling confused, sad and anxious. If you or someone you know has been diagnosed, I really recommend you check out the Alzheimer’s Society website, which is a wonderful resource of evidence-based, well written articles and factsheets. They also offer local groups, support and care.

It’s important to hold onto hope when dementia is around – although it’s hard to do this 100% of the time because we are all human. I hope the information I’ve shared helps to increase the compassion we have towards people with dementia: they are not empty or lost, but their needs have changed. Deep down, they are still the same people with the same likes, dislikes, loves and need for affection, even if those things are harder to reach than they were before.

If you’d like to hear more from Lauren, you can follow her on Twitter @LRooneyPsych.