The early signs and dementia stages are subtle, and they often go unrecognized. Maybe she misplaced her keys. Or maybe he mixed up which day it is and went to a doctor’s appointment on Tuesday instead of Wednesday. Or she couldn’t remember the word for “recipe” while telling you her secret ingredient for cookies. It could just be the ordinary memory loss of ageing – or it could be warning signs of dementia.
For both elderly people and their families, dementia is a terrifying word. It’s one of the most feared chronic diseases of old age due to its impact on every aspect of life, from a person’s ability to maintain relationships to their ability to live independently. It’s also one of the most common health issues for people over age 65, affecting an estimated 412,000 Australians. In 2019, dementia was the second leading cause of death in Australia.
Dementia isn’t actually a disease but rather a cluster of symptoms that can have a variety of causes. Depending on the cause, dementia may progress in a variety of ways. In most cases, dementia worsens over time through a series of stages. Keep in mind, though, that dementia can be managed. It’s difficult for both elders and their caretakers, but with support and care, it’s possible to live with dementia – and to continue to enjoy life.
Medical professionals rate the severity of dementia with a tool called the Reisberg Scale, or the Global Deterioration Scale. This scale has 7 stages, ranging from full cognitive function to late-stage dementia.
Stage 1: No cognitive decline
In stage 1 of the Global Deterioration Scale, or GDS, the person isn’t experiencing any symptoms. There’s no cognitive decline, and although they may have occasional memory lapses, forgetfulness has no impact on their function. At this stage, the elderly person is fully able to take care of themselves, perform daily tasks, and enjoy their usual activities.
A person in this stage is not diagnosed with dementia. However, a CT scan of the brain at this stage could show changes indicating the likelihood of future cognitive decline. Genetic testing can also indicate probability of developing dementia, but neither of these tests means a person will definitely develop dementia in the future.
During this stage, before any symptoms start, is the best time to talk with family and loved ones about managing dementia. Over age 65, the likelihood of developing dementia becomes increasingly more common, and by age 85, nearly 20% of Australians have symptoms of dementia. Thinking about the possibility can be frightening, but it’s important to discuss what type of care a person would want if they were to need it in the future.
Here are some key areas to consider before your loved one experiences any cognitive decline:
- Help them organise important financial papers and information, and encourage them to tell a trusted person how to access it. In most states and territories, a person can choose someone to appoint with ‘enduring power of attorney’, which enables someone to make financial decisions on their behalf if they become unable to.
- Discuss their medical goals and the type of care they would want if it’s needed, and encourage them to write an advance directive, which describes their wishes regarding medical treatment if they become unable to communicate.
- Encourage them to stay active. If they’re retired, help them find interesting volunteer groups or social activities to be involved in.
Stage 2: Very mild cognitive decline
At this stage, your loved one’s symptoms are indistinguishable from normal ageing, and their symptoms do not qualify for a diagnosis of dementia. They may occasionally forget appointments or have trouble remembering words, or they might neglect to pay a bill one time. Although these incidents can be concerning, they don’t have a serious impact on quality of life. At this stage, the person is still able to function normally and take care of themselves independently.
At this stage, many people assume that their forgetfulness is normal, and in many cases, it is. However, if someone thinks they might be experiencing mild cognitive decline, it’s important for them to talk with their doctor. A full neurological exam can determine whether they are experiencing signs of dementia, and it will also provide a baseline measurement of their cognitive functioning. This will enable their doctor to recognize any changes in cognitive functioning over time.
Being able to recognize those changes is important, because early diagnosis and treatment of dementia can make a difference in the progression of the disease. Some causes of dementia are treatable and reversible. Even with progressive dementia, treatments can help slow the progression, or at least improve symptoms, especially during the early stages of disease. The fear and stigma around dementia can make many people hesitate to seek treatment, but getting an early diagnosis can help with getting the best treatment and care.
Stage 3: Mild cognitive impairment
Mild cognitive impairment is the stage where symptoms begin to affect a person’s ability to function in daily life. Mild cognitive impairment, or MCI, is the stage in which the symptoms of dementia become more serious than the normal symptoms of ageing. In this stage, forgetting items and appointments becomes more frequent. Instead of having trouble remembering a word, the person may have trouble remembering their train of thought or completing a task. They might also have trouble getting lost in familiar environments.
This is often the stage when friends and family first notice a problem. Although a person with MCI can usually continue to perform most daily tasks and to live independently, at this point changes in functioning can begin to affect quality of life. People with MCI might sometimes forget to pay bills, or they may have difficulty organising and completing complex tasks. It’s important to know, however, that mild cognitive impairment doesn’t always progress or worsen – it can stay constant or even improve, depending on the cause. In addition, this stage still doesn’t qualify for a diagnosis of dementia. Like other early stages, it’s important for a person experiencing MCI to visit a doctor for a full assessment, diagnosis, and treatment. With regular visits, a doctor can determine whether cognitive function is declining or staying constant, which is important to know to prepare for the future.
If your loved one has mild cognitive impairment that doesn’t improve with treatment, then this stage is a good time to help them begin to adjust to living with cognitive changes. Take simple steps to help them organise cognitive tasks and and keep track of important items:
- Reduce clutter in the house, especially in high-use areas such as the kitchen. This can improve focus and help them not lose track of what they’re doing during more complex tasks such as cooking.
- Use technology such as electronic remote finders to keep track of important items like keys.
- Hang a readable, large-print appointment calendar in a visible location to help them remember appointments. Make sure they mark each day off so the current day is always clearly visible.
- Organise medications in daily dispenser containers to help them keep track of what they need to take each day.
- Encourage your loved one to participate in social activities and to enjoy stimulating activities like puzzles and games, which can help improve memory and mental function.
Stage 4: Moderate cognitive decline
This is usually the stage when dementia is diagnosed, because it begins to have a significant impact on a person’s ability to function. Short-term memory begins to be more affected, and the person may entirely forget recent events. A person with moderate cognitive decline cannot navigate to new places, and they have significant difficulty completing complex tasks such as managing finances.
In this stage, a person sometimes becomes confused about where they are and what is happening. They may struggle to perform routine tasks as well as complex ones, and they will likely need help with household management tasks like paying bills or cooking. It’s also common for a person in this stage to become emotionally moody, to lose interest in their normal activities, and to withdraw from social events.
This stage is difficult for family and friends, because although the person’s cognitive decline becomes obvious to everyone around them, they’re often in denial about their symptoms. Supporting your loved one in this stage means encouraging their independence as much as possible while making sure they have the support they need:
- Encourage them to get a diagnosis. People with moderate cognitive decline are often hesitant to visit the doctor and in denial about their symptoms, but early diagnosis is key to managing dementia.
- Label important places and items in the house. At this stage, a person may sometimes get disoriented even in familiar environments. For example, they might forget where the bathroom is in their house. This can be extremely frustrating for both them, especially since this confusion is inconsistent. Labels can help your loved one find things when they lose track of where they are.
- Help them set up systems. For example, if they frequently forget to pay bills, help them set up autopay through their bank so they don’t need to remember to make payments. Cognitive ability can vary in this stage, with a person sometimes having good functioning and sometimes becoming confused and forgetful, so work with them to set up systems while they are functioning more effectively.
- Seek out support. If your loved one has difficulty with necessary daily tasks such as shopping, preparing meals, or cleaning house, they may be eligible for support services through the Commonwealth Home Support Programme or a Home Care Package.
Stage 5: Moderately severe cognitive decline
In this stage, dementia begins to have a serious impact on quality of life, and your loved one cannot perform many tasks without support. They may need help with simple activities of daily living such as bathing, grooming, and getting dressed. Both long- and short-term memory is affected, and they may begin to forget the names and identities of family and friends, especially acquaintances and family members they don’t see often. People with moderately severe cognitive decline will often get confused about where they are, and they may forget important information such as their address and phone number.
The emotional impact of dementia also becomes more severe at this stage. People with stage 5 dementia may become moody, anxious, depressed, or angry. They might mistake one person for another, such as mistaking a grandchild for a spouse, and they might experience significant personality changes, along with agitation and suspicion. This stage can be extremely painful for family members, especially if the person fails to recognize a loved one or blames a loved one for something they remember (or misremember) from the distant past.
Here’s how to support a loved one with stage 5 dementia:
- Help them get needed support for daily life activities such as eating and personal hygiene. In addition to a Home Care Package, a person with stage 5 dementia is likely eligible for a dementia and cognition supplement, which provides additional funding for home care for people with cognitive decline.
- Be patient. It can be frustrating to talk with someone who continually forgets their train of thought and the words they’re trying to say. But it’s even more frustrating for the person who’s forgetting these things. Give your loved one – and yourself – time and space when you need it.
- Identify yourself and other loved ones if they seem confused about your presence. Don’t be offended if the person doesn’t know who you are; just tell them who you are and that you love them.
- Avoid arguing. People with stage 5 dementia may invent stories to piece together their remaining fragments of memories, and they may make up identities for people they don’t fully recognize. As much as possible, avoid arguing with them about the reality they’re piecing together, and instead try to appreciate positive emotions you can share.
- Don’t ask if they remember something that happened with you, especially something that happened recently. This can create frustration. Instead, listen to the stories they want to tell, which are likely important or meaningful events from long-term memory.
Stage 6: Severe cognitive decline
This stage is also referred to as middle dementia, and a person in this stage needs significant support for daily life tasks. In stage 6, a person cannot perform basic tasks such as eating and personal hygiene without help, and they have difficulty speaking and communicating due to loss of words and inability to organise sentences. They experience significant changes in personality and behavior, which could include delusions and severe anxiety.
In addition to losing memories of recent events, in this stage a person begins to forget long-term memory, including important and meaningful events. They might not recognize even their closest loved ones such as immediate family members. It’s common for people in this stage to experience physical challenges as well such as incontinence and difficulty sleeping. They may confuse day and night, and wandering at night is common.
Here’s how to support a loved one with stage 6 dementia:
- Keep them safe by using locks to prevent wandering, installing safety knobs to prevent them from leaving the stove on, and adjusting hot water heaters to prevent burns.
- Keep toxic or dangerous substances locked and out of sight.
- Use good lighting throughout the house, especially in stairways and hallways where they’re more likely to trip. People with stage 6 dementia are at high risk for falls and injury due to confusion, disorientation, and decreased physical coordination.
- Create a calm environment by reducing background noise, removing distracting or confusing items such as large mirrors, and reducing clutter. For a person with stage 6 dementia, background noise from the television can trigger agitation, because they think the person on the television is talking to them. Their own reflection in the mirror could be mistaken for a strange intruder. Clutter can exacerbate confusion and agitation.
- Encourage routines. Work with your loved one’s care team to provide a predictable routine that includes calm, soothing activities like walking in the garden, doing art projects, or listening to music.
Stage 7: Very severe cognitive decline
In late-stage dementia, a person needs help with even basic tasks. At this stage, the cognitive decline affects motor skills as well as memory and processing, and they can no longer speak, walk, or use the restroom without help. They may have difficulty eating and swallowing, and they might resist eating, resulting in weight loss or dehydration. In this stage, a person also becomes more susceptible to infections.
Although your loved one with stage 7 dementia may be confused about who they are, who you are, and where they are, they are still fully conscious and aware of discomfort, frustration, and pain. Providing care at this stage is focused mostly on comfort and physical needs, but it’s also possible to continue to nurture connections and relationships for a person in stage 7 dementia. Here’s how:
- Make sure their needs for food, continence, and movement are met. Soft, sweet foods may be more palatable in this stage, and diapers or other continence items are likely necessary. Because the person can’t walk on their own, it’s important to help them move and shift positions regularly to avoid skin breakdown and bedsores.
- Get support for full-time care. A person with late-stage dementia needs round-the-clock care, and residential care may be the best fit for a person in this stage.
- Connect through simple activities. Verbal communication is less meaningful for your loved one in this stage, but you can still relate and share positive experiences. Spending quality time with a person who has stage 7 dementia could involve pleasant sensory activities such as sitting in sunlight together, smelling a favorite scent, or listening to music.
It’s not surprising that so many people fear dementia. Even mild dementia is frustrating and challenging, and severe dementia is debilitating. But dementia isn’t always progressive, and it’s not always a sign of a serious disease. When it is progressive, it often advances slowly, which means that people in early stages can often look forward to years of mostly functional cognition. If you or a loved one is experiencing signs of dementia, don’t try to manage it alone. Seek out a diagnosis and treatment early, and find out if you’re eligible for care services to support your family as your needs change over time.
Do you think you may be eligible for a Home Care Package? Contact us to learn more about home care services for dementia support.