Family members of someone with a dementia often come come to us because they want to know what is “coming down the road.” They want to know what to expect as the dementia progresses and how to prepare for the future. We think it helps to think of changes as occurring in three areas: in the person with dementia, in the relationship between caregivers and the person with dementia, and in the caregiver. This month, we talk about the first one–changes in someone with dementia.
Dementia can be understood as a progressive and non reversible syndrome during which people gradually lose more and more abilities in all areas of their life. The rate and order of loss varies–for instance some people become incontinent earlier than others or have trouble in hygiene, but by end stage dementia,all sufferers will become incontinent and need to be bathed.
Many factors affect the rate of progression of dementia. These include the type of dementia that someone has, age at onset, previous health and other concurrent medical issues, genetics, and softer issues such as support. There have been various attempts to predict the rate of decline, for example, the tool developed by Columbia University. However, remember that there is considerable variation from person to person.
In order to think about what will happen and what will be needed as dementia progresses, consider the areas in which abilities are lost. These include the following:
Personal care: People will lose the ability to care for themselves, for example,to bathe and wash themselves, to dress themselves, feed themselves,and to get to the washroom. This generally happens gradually (although if dementia occurs from a stroke, the occurrence is sudden). For instance, in earlier stages, they may not bathe well, but will still get in the shower, and as the condition progresses, gradually stop bathing. or, for example, they may need reminding to go to the washroom, then need incontinent products for accidents, and then become totally incontinent.
Home management: People lose the ability to do tasks such as shopping, laundry, banking, housework, or yard work.
Nutrition and intake: People’s ability to feed themselves appropriately will decline. They may forget to each, eat too much, not remember whether they have eaten or not, or not know when they are hungry or thirsty, until at some point they need to be fed, and may forgot how to eat or swallow. At that far end stage they can become at risk for choking.
Memory loss and orientation: This is the most commonly known symptom of dementia. It will start usually with short term memory–what someone did or ate or who they saw recently. They may ask the same questions over and over. In later stages they forget the names of loved ones who or what the relationship was. People may not know where they are, and they may mix up people and times from their past. For instance they may think their spouse is their parent or that they are going to go home to the home of their childhood.
Personality: A person may become agitated, angry, hostile or accusing, or loving and placid when they were not when well. They may become anxious and frightened and not be able to be left alone. They may become dis-inhibited, telling off colour jokes, for instance, or in later stages removing their clothing.A person may become a-motivational they just don’t seem to want to do anything.
Executive function: This refers to a person’s ability to make decisions and carry out tasks, or their insight, reasoning ability, and judgment. As dementia progresses one loses the capacity to use these functions, and that is why, for instance you often cannot reason with someone with dementia–they are not able to understand. This is also why they are often unable to do the home tasks such as shopping or housework–they cannot plan for, organize, and carry them out because they are complex tasks.
Language: People have increasing difficulty in finding words or expressing concepts, thoughts, or ideas. The ability to understand what someone says to them becomes impaired. In later stages speech and understanding are severely impaired and they may stop talking completely.
Mobility and motor control: People become increasingly at risk for falls. Balance and co-ordination become impaired. In later stages they are unable to walk, get in or out of be, or on and off furniture of the toilet.
There are several models which describe the progression of dementia ( usually Alzheimer’s type) as a series of stages or memory decline or of ability to carry out the above tasks decline, indicating the severity of the dementia is increasing. As this occurs, the need for support will increase. Caregivers will be called upon to provide that support.
Understanding the areas in which deficits will occur will help you plan for the kind of help you will need, the kind of support you will have to provide, and the skills you will need to develop. What you cannot provide, you will have to find from the public sector (local health authorities or departments), the private sector (companies such as Diamond Geriatrics or Home Care companies), or from non profits (such as the Alzheimer’s Society or Heart and Stroke Foundation).
As you look at will be needed going down the dementia road, you will need to ask yourself some hard questions–what can I do and what can I not do? What am I willing to do, and at what point will I have to find someone to help or place my loved one in seniors housing of some kind.
What Will Remain as Dementia Progresses
While Caregivers may focus on providing for losses which occur as dementia progresses, it is important to remember what is not lost. Deep in dementia, people still have emotions. They react with fear and anger sometimes, but also with love, affection, and laughter. You can still joke with someone. You can hold their hand as you walk down a street, and put your head on their shoulder. They may enjoy the warmth of a blanket, the smell of baking cookies, and especially music. Their eyes will light up as they watch a toddler playing with toys, or a puppy licking their face or sitting in their lap.
Learning and focusing on what remains is not only good for the person with dementia, it is what will help caregivers experience the rewards that can come with caregiving.
