We have used the term ‘thinking’ to describe the activities of planning, solving problems, making decisions, concentrating and focusing attention. These are complex activities that draw upon information stored within many areas of the brain. They are sometimes described under the term ‘cognition’. 

These complex activities require people to select courses of action from several possible options or alternatives. This typically involves evaluating information, considering various factors such as circumstances, costs, benefits, risks, and consequences, making choices that best fit with their goals, values and priorities, and then assessing those actions and decisions, whilst monitoring them with a view to adapting them on an ongoing basis. 

In every scenario people face, the brain gathers all the necessary information required to understand and interpret the situation a person is in. It needs to retrieve and organise that information according to the decision or task that is to be carried out. It also needs to regulate what a person does with the information that has been gathered and how they behave in response. 

Many activities which we take for granted and which may seem straightforward, actually require a complex interaction of thought processes across a wide variety of areas within the brain.

For example, if someone is presented with a large bar of chocolate, their brain collects the necessary information from the areas that store relevant factual information to enable them to identify the item that is in front of them, and to know it is something they can eat – and probably enjoy after they have unwrapped it. In addition, the areas within the brain which are responsible for controlling what to do with this information also have an important role to play in this scenario. These areas of the brain hold a wider bank of personal and social information that is relevant to the person and their situation. These areas of the brain sift through this bank of knowledge and information and enable people to make decisions about how to respond to the chocolate bar in front of them. For example, these areas of the brain may hold the important information that a person is diabetic, or that they are due to eat lunch in 15 minutes, that they are trying to lose weight, or that the chocolate is intended for someone else – all of which come into play to enable someone to make a decision about whether they eat the chocolate at all, and if they do, how much they choose to eat.

As another example, the activity of getting dressed requires many steps to complete. It requires an appreciation of the time of day, recognition of the temperature or likely weather forecast, remembering where clothes are stored, appropriate selection of items to wear and then the placing of appropriately chosen items in the correct order – all the while, remembering that ‘getting dressed’ is the activity we are in the process of doing, seeing it through to conclusion and resisting starting other activities until we have completed the activity.

Depending on the changes in thinking that a person living with dementia is experiencing, the level of need will vary.  The ability to reason, concentrate, recognise close relatives and friends, make decisions (basic or complex), know where we are and what time of day it is, all impact the ability to express choice, recognise risk, know what to expect of ourselves and others and how well someone can manage the symptoms of dementia and other health conditions they may be living with. Needs may fluctuate and be at times unpredictable depending on how the symptoms of dementia are affecting someone.

Deficits in the activities of planning, solving problems, making decisions, concentrating and focussing attention can be linked to behavioural changes. People living with dementia may behave differently as a result of having less capacity for attention, or fewer reserves to apply to solving everyday problems. Becoming frustrated and short-tempered or perhaps withdrawing and losing confidence are common responses. Someone living with dementia may also say things they wouldn’t otherwise say as a result of the confusions or complexities they are juggling.

Why do changes in thinking and cognition happen? 

Dementia reduces the number of brain cells in many of the areas of the brain responsible for the processes of thinking, and can do so to varying degrees and in ways that change over time. Alongside the reduction in the number of brain cells available for a particular ‘thinking’ function, the system that conveys messages between these brain cells is also impacted. It can be helpful to picture a string of fairy lights which have been set to the ‘intermittent mode’, and which fade in and out in an apparently random manner. Sometimes a particular light is on, at other times it isn’t. When the light isn’t on, it can’t receive, process or send on any messages that may have been sent to it.

The frontal lobes are particularly involved in coordinating this type of decision making and activity. As a result, it is common for people with a diagnosis of frontotemporal dementia (FTD) to experience the following difficulties with planning, problem solving, decision making and concentrating, although people with other types of dementia typically experience them too: 

• difficulty organising
• difficulty in planning and initiation (getting started)
• inability to multitask
• trouble planning for the future
• difficulty processing, storing, and/or retrieving information
• difficulty with abstract concepts (the inability to make the leap from the symbolic to the real world)

Being tired or anxious can also affect thinking skills and abilities. People living with a rare dementia may be additionally challenged by disjointed perceptions of the world around them, produced by visual, auditory or other sensory compromises caused by dementia. Symptoms of dementia such as hallucinations, delusions, apathy, lack of insight or memory loss can all reduce the ability to think clearly.

It is a cruel conundrum that dementia reduces the resources people have available to apply to thinking activities and yet at the same time means that these very activities require more resources and effort than they did previously.

Dementia affects the processes involved in ‘thinking’ in lots of ways. The information on this page describes some of the main ones that RDS members have described as most common to them. The terms used are not intended as fixed terminologies but are intended to help us identify how much is required in order to maintain general thinking processes, to help us understand why particular challenges are arising, to appreciate how distressing it can feel to struggle with these activities, and to look for strategies to help us to find ways to make thinking processes as manageable as possible. 

It is easy to feel frustrated that seemingly simple activities are now so complicated and time-consuming. Please visit our adapting emotionally pages for more information and some suggestions of ways that might help with some of these issues.

Planning

Planning requires a recognition of the future, as distinct from the present moment. Planning for a holiday that is happening in a few months, a shopping trip that is happening later the same day, or a meal that needs to be prepared with the next hour all require us to process a sequence of events – both the present and future, to achieve an overarching goal. This involves complex multistage activities and requires that the frontal lobes create and hold information in the right order and the right context. Relatively straightforward plans can become difficult to carry out, and plans which require multiple components, such as dropping the children at school, then calling at a local store to pick up groceries, via a stop at the dry cleaners to collect clothes, can become impossible to co-ordinate and overwhelming. Feeling overwhelmed can lead to another set of challenges, which can in turn produce feelings of fear, vulnerability, a lack of confidence and uncertainty and behaviours ranging from anger and frustration to social withdrawal and detachment.

Not being able to foresee a forthcoming event or have insight into the needs and implications of it, impacts our awareness and our ability to plan for it. In addition, when the parts of the brain that are integral to this function are damaged by dementia, the capacity for planning is reduced. 

People may be described as seeming disorganised or not able to follow simple instructions because of changes in their ability to plan.  It is important to remember the complexities of planning, and the requirement to be able to understand the words being used to describe a line of thought, follow that line of thought, hold it and remember it. People living with a rare dementia might retain abilities in many of these aspects but become less able to communicate their plan to others, which can result in different but equally frustrating challenges. It is not uncommon for people to withdraw from social events or occasions which require even small-scale planning, because of the added burden and pressure they entail. Symptoms such as apathy may contribute to a person’s lack of interest in activities generally, and therefore also their motivation to plan for them.

Problem solving

Problem solving can be more nuanced and specific than planning. It generally refers to ‘in the moment’ activity that is required in response to something that may have come about unexpectedly. Typically, it requires a person to be able to think flexibly and ‘in the moment’, and to find alternatives if an expected plan of action needs to change. These alternatives need to be appropriate and achievable in a safe manner.

Decision making

Decision-making requires us to be able to understand, retain and process information for long enough to be able to make a decision based not only on the information itself but also with appreciation of the consequences of the decision being made. It occurs whenever we are in a situation where we can respond in more than one way. When we make decisions, we factor in many pieces of information which we integrate from a range of sources, and there are usually very many smaller decisions which need to occur in even relatively simple decisions.

We don’t always realise that we are making a decision, as we respond to our analysis of the situation we are facing. It is often not until the processes of thinking are compromised in some way that we realise the complexities of decision-making. If someone is tired, upset, angry or in pain, we generally recognise that decision-making processes may be impaired, but may not be able to clearly identify why. Thinking ‘just feels muddled’ or ‘less clear’. Likewise, when people are living with a rare dementia diagnosis, even in the early stages, or if they are worried about developing dementia, there may be subtle ways in which their decision-making processes are impaired.

If living with dementia affects the way someone experiences the world around them, because it affects the way they see, hear, understand or communicate, they may find themselves making decisions based on perceptions of a reality that is not entirely accurate. If dementia has affected a person’s insight, their emotional response system or ability to initiate activity, they may find themselves struggling to accurately contextualise the environment which they are making decisions in and about. People living with a rare dementia may be less able to recognise whether they have made an unwise or unsafe decision (see RDS website page on choice and control for further information).

Attention and concentration

We all have finite resources to give to any of our thinking activities and processes. Our ability to concentrate can be impacted if we are distracted by other things going on inside our minds, or by events happening in the environment around us. For example, pouring water into a glass may completely absorb a person’s full attention, meaning that they don’t have capacity to attend to anything else in that moment. People living with dementia may be mistaken as being rude, when in fact they can’t attend to a conversation happening alongside the activity because the activity of pouring is taking up their full capacity.

Some activities take longer to complete than others, and despite an intention to see them to the end, for some people living with dementia, their ability to do so is reduced. This might be because they forget what the intended outcome is, or because the distractions of other things happening in the surrounding environment are too immediate to ignore, or that the effort of focusing on the task is hand is just so challenging that it can’t be maintained for as long as previously possible.

Even without a diagnosis of dementia we can relate to the challenges of trying to work whilst we feel unwell, or the overwhelm of planning and preparing for events, like having lots of visitors staying for meals over Christmas. We typically engage strategies to help us manage these moments – and to equip us to ‘get by’. For example, prioritising only the essential items of work until we are feeling better, or taking a step back and creating a list to work through in order to organise what needs to do in advance of an extended family gathering. It can be harder to draw on those strategies for people who are living with all that a diagnosis of dementia brings with it.

People who can help

Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.