Dementia is one of the most difficult diseases to come to terms with and manage, both for those suffering from the disease itself and for families and caregivers. Caring for a loved one with dementia is an exceedingly challenging task, one that can be stressful, distressing, and extremely complicated, and something that puts enormous pressure on family members and caregivers alike. Dementia home care services can help, but ultimately the key is a better understanding of the condition, and how to manage it.
Dementia is something of a catch-all term for a number of disorders arising from conditions like Alzheimer's disease. It can have a number of effects, ranging from memory difficulties and failure of cognitive functions to communication problems and inability to properly care for oneself. It can cause changes in behavior, character, mood, and personality, which makes it unique for caregivers as they have to deal both with a physical disorder and a shift in the normal patterns of interaction and communication.
Understanding dementia - what it is, how best to manage it, and how to cope with the changes in a loved one’s behavior that arise from it - is vital when it comes to treating family members suffering from Alzeheimer’s and other similar conditions. In this article we are going to explore some of the ways in which one can understand, communicate with, and interpret patients with dementia, as well as offering advice and guidance on how to face those challenges that care providers may encounter when caring for someone with dementia.
What is dementia?
While it is often described as a fixed, individual disease, dementia is actually an umbrella description for a variety of disorders and singular conditions that produce a specific set of symptoms. The most well-known of these is Alzheimer’s disease, but dementia can also refer to vascular dementia, Parkinson’s disease, dementia with Lewy bodies, frontotemporal dementia, and even conditions brought on by severe head injury.
The conditions referred to by the term dementia are all brought on by significant and abnormal shifts or changes to ordinary brain function. These alterations, whatever their cause, bring about certain specific results, including cognitive impairment, decline in the ability to think clearly and effectively, and a severe impairment of the ability to carry out normal, everyday life. These abnormal brain changes also can often have a significant impact on personality, emotions, mood, general behavior, and interpersonal relationships.
As mentioned above, there are a variety of diseases and disorders that result in forms of dementia, but Alzheimer’s is far and away the most common, making up around 70% of all dementia cases. Vascular dementia, resulting from tiny internal brain hemorrhages which cause bleeding and clotting, accounts for most of the rest of dementia cases. One of the most troubling aspects of dementia that arises from these two conditions is that it is largely irreversible, although with medical care it can be delayed and treated.
It is also worth noting that there is a big difference between dementia and delirium, and that dementia is entirely separate from the natural aging process (and associated loss of memory and certain other cognitive abilities that can present dementia-like symptoms). Dementia in the past was often described as senile dementia, which conflated it with the natural aging process and gave the mistaken impression that serious loss of mental faculties was just a normal part of getting older, which is far from the truth.
How dementia sets in
The different diseases which cause dementia all affect the brain differently, but the way that dementia sets in is similar regardless of the underlying cause. Dementia is caused by physical damage to the brain caused by one of these diseases, and so the initial, early stages of dementia are when only a small portion of the brain has suffered damage. As a result, the signs of early onset dementia tend to be mild, with cognitive abilities not significantly affected.
As the disease progresses and damages more and more of the brain, the symptoms become more pronounced and serious. Each specific disease targets a different part of the brain, and therefore the early symptoms of dementia are extremely varied. As the disease progresses and affects more and more of the brain, new symptoms will present themselves. As a result, moderate and severe dementia stages tend to look far more similar regardless of the original cause.
How dementia affects the brain
Dementia affects the brain by harming brain cells and preventing them from transmitting information to each other. As more and more brain cells are prevented from communicating, significant changes in brain function and behavior occurs.
How dementia alters daily life and family relationships
The impact of dementia on both daily life and relationships with family and friends can be significant.
On a fundamental level, as cognitive abilities decline in patients with dementia, daily life becomes far more complicated and challenging. Memory loss, lack of clarity of thought, confusion, problems with language, and mood swings can all make navigating day-to-day tasks extremely difficult. These sorts of problems, whilst distressing and complex, are at least fairly easy to understand and predict, and can therefore be managed relatively effectively.
Far more nuanced and difficult are the ways in which dementia can alter relationships between patients with dementia and their family, loved ones, surrogate decision-makers, and friends.
To start with, a diagnosis of dementia inevitably means that you will have to become far more dependent on others, from family and friends to health care providers. You will have needs that you can no longer fulfill by yourself, and will need to be vulnerable and to accept care from someone else. This on its own can be a difficult thing to do.
Taking on a caring role will also change the relationships you have with family and friends. It can raise feelings of inequality in a relationship, cause resentment or frustration, and present difficulties as you struggle to come to terms with an unexpected change in relationship dynamics. Dementia can also cause dramatic changes in behavior, mood, and personality, which can be extremely difficult to cope with, particularly if it results in anger or other negative emotional responses.
As a patient, people with dementia will find themselves confused, frustrated, and angry without being able to fully explain why or process these emotions properly. As a carer, being a surrogate decision-maker and responsible for a loved one can be stressful, depressing, and extremely difficult, and dealing with these feelings (and even just physical tiredness) can be extremely tough.
All this being said, dementia care does not always have to be a purely thankless task. Some people find that the caring relationship actually brings them closer together, and family carers often find the work deeply satisfying and rewarding.
What are the stages of dementia?
All variations of dementia, whatever the underlying cause, are progressive. This means that the symptoms of dementia will start off slowly, with minimal impact, and will get worse, with increased cognitive deficits, as time goes by. As someone with dementia slowly declines, they will have increasing care needs and require more and more assistance to continue with ordinary, day-to-day tasks. The severity of the disorder will vary from patient to patient, as will the level of support needed. In general, early stage dementia is often so mild as to be unnoticable, whereas late stage dementia may require treatment in a hospital environment and advanced care planning.
Very broadly speaking, there are three stages of dementia - mild, moderate, and severe. Classifying the various symptoms and challenges of dementia into these three categories is imprecise, but can be extremely helpful when it comes to working out the level of care required, how much things will change over time, and planning for the future.
How does dementia affect understanding?
One of the most difficult things about dementia is how it can affect your understanding of the world and your own internal interpretation of what is happening to you and around you, and therefore have a huge impact on how you express yourselves externally. Being unable to process received information in a normal way can be extremely troubling, and being unable to understand the visual and verbal information you receive during the course of your life can make ordinary interactions extremely difficult. This inability to understand or process the world around you can result in a number of behaviors.
Wandering
People with dementia may ‘wander’, meaning they will walk around the place for no particular reason, often with no specific destination in mind. This is often a problem, as people with dementia may end up in unfamiliar locations, unable to find their way home, or even describe to others where home is.
A person with dementia may wander for a number of reasons, ranging from boredom or restlessness caused by medication to an attempt to deal with a physical need or desire, or an attempt to find someone or something.
Dealing with wandering in people with dementia can take many forms. You can ensure they get enough regular, supervised exercise, to ensure that they don’t feel bored or restless during the day. You can make sure that their physical needs or desires (thirst, hunger, toilet time etc) are proactively taken care of. You can also take more preventative steps, such as installing new locks on doors, putting up barriers, using child-safe gates and doorknobs, or installing home monitoring and security systems so you can keep tabs on someone with dementia without being with them at all times.
If you are taking care of people with dementia who wanders, it is important to ensure that neighbors know about and understand this behavior, and that your loved one wears an ID bracelet with relevant information at all times.
Agitation
People with advanced dementia often display agitated behaviors, which can include restlessness, lack of sleep, irritability, and verbally or even physically aggressive behavior and speech.
In a similar way to wandering, agitation can often be triggered by boredom, a physical need, or from discomfort, but it can also arise when someone with dementia feels scared, confused, insecure, or tired. It is often associated with a lack of control, which can arise in unfamiliar settings and scenarios, or during distressing treatments.
Agitation can be managed and mitigated by avoiding unfamiliar places or settings, avoiding crowds or loud noises, and by ensuring a calm, consistent, familiar routine and home environment. Avoiding food and drink like sugar and caffeine can be a big help, as can ongoing help and support that allows individuals with dementia to maintain as much independence as possible.
Fatigue
Due to many of the above issues, fatigue is often a huge factor in the lives of people with dementia. Restlessness, agitation, aggression, troubling behavior, confusion, and distress all often peak towards the end of the day, as all of these factors combine to create severe fatigue. Unfortunately, this often affects their ability to sleep, which creates a vicious cycle.
Combatting fatigue requires ensuring a soothing, safe, and familiar place to sleep, with no external stimuli that might cause confusion or distress. Making sure that your loved one is eating correctly, is hydrated, and has done enough exercise during the day is also key. Activities in the run-up to bedtime should be designed to help them wind down, and include soothing music and dimmed lights.
Fatigue can exacerbate all the other symptoms of and problems caused by dementia, which is why it is one of the most important things to combat.
Paranoia
Suspicion, fear, jealousy, and paranoia is one of the most common side-effects of dementia, and can be one of the most hard-to-deal-with for carers and family members. It is hard not to take accusations from loved ones personally, but it is vital not to do so.
Disagreeing or arguing with a family member with dementia who becomes paranoid is not helpful. It is better to manage their suspicions - letting them keep small amounts of money on their person if they are concerned about theft, for example, or ‘helping’ them with searches until they can be distracted into other areas. Gentle, physical reassurances like touches or hugs can also be a great way to demonstrate affection and safety without enabling delusions.
Hygiene
People with dementia often struggle to maintain good personal hygiene, as they forget simple tasks like bathing regularly, wearing new clothes, or brushing their teeth. Poor hygiene can be problematic for a number of reasons, not least because it can make someone with dementia feel embarrassed or vulnerable without properly understanding why. Having to be washed or cleaned up represents a significant loss of agency and independence, and can have significant negative repercussions.
Dealing with hygiene issues usually involves attempting to stick as closely to a family member’s normal bathing routine as possible, and giving them as much privacy and independence as possible too. Ensuring modesty and safety is key, so installing grab-bars and non-slip mats is a must, as is providing all the appropriate products. This will allow you to let your loved one do as much as they can by themselves.
Tips for Understanding a Patient with Dementia
- Create a safe space for communication. Help your loved one to communicate better by setting a positive tone before you interact with them, and maintaining a good mood and good behaviors throughout, with appropriate body language and facial cues. This can be tough, but it is an important part of managing someone with dementia’s understanding of external events.
- Don’t try to do too much at once. When you are communicating with someone with dementia, limit other external stimuli and distractions. Turn off music and TV and avoid loud environments.
- Overcommunicate. Always identify yourself and describe your relationship with the person, and speak clearly and simply, without unnecessary detail. Ask simple questions, ideally with yes or no answers. Listen carefully to what they have to say, and try not to criticize, judge, or correct them.
- Activities should be carried out step-by-step, with clear, simple instructions at every stage.
- Active listening, with exaggerated facial expressions, body language, and physical cues, is important, as is physical reinforcement with touch.
- If communication becomes difficult, move on. Never try and push issues, and if a conversation or a topic becomes stressful, move on to something simpler, or something from the past.
Understanding and Interpreting Behavior
Understanding and interpreting the behavior of someone with dementia can be tough, but it is key to better communication, and to achieving a mutual understanding between carer and patient about what is happening. Identifying the types of behavior mentioned above, understanding the root cause, knowing how to talk to a parent with dementia, and knowing how best to address the signs and symptoms of dementia, can go a long way towards managing the condition of your loved one.