Impact of Dementia

Each individual will experience dementia and its progression differently. For some people, progression is rapid, while for others, it develops more gradually.

There are different models that detail the progression of dementia: a three-stage model, a four-stage model and a seven-stage model. These are the commonly recognised stages or phases in the three-stage model:

Stage 1: Early-Stage Dementia

Memory lapses characterise the first stage and having difficulty finding words (mild cognitive impairment). Many people continue to function at this stage, but symptoms begin to affect their daily lives. The onset of these symptoms can be gradual and may be recognised only as the disease progresses further.

Early-stage dementia symptoms:

• Short-term memory loss and forgetting recent events
• Getting lost, forgetting where they are and what they are doing; and misplacing objects
• Difficulty problem-solving and completing complex tasks, and the loss of other skills
• Trouble expressing themselves and organising their thoughts, losing track of conversations and repeating themselves
• Personality changes, for example, withdrawing, interacting less, losing interest in activities and in engaging with people, becoming irritable, being reluctant to try new things and becoming more self-centred and easily upset

Stage 2: Moderate Dementia

As the disease progresses, the person begins to lose independence and require more support. The symptoms outlined for early-stage dementia increase in intensity and frequency.

Symptoms of moderate dementia:

More forgetful – Recall of past events remains, but they forget names of familiar people such as family members and confuse the identities of different people; they may leave the gas turned on or forget to remove pans from the stove when cooking

• More easily lost, even in familiar places, and more likely to experience disturbed sleep and wander off, especially at night
• More confused about where they are and what time or day it is
• More likely to behave inappropriately and overlook social norms and conventions
• More likely to neglect personal care and forget to eat or drink regularly
• More frustrated, agitated and distressed
• More likely to see and hear things that are not there and to become suspicious and hostile

Stage 3: Advanced (Severe) Dementia

In the third stage, the person’s physical and mental condition declines further, and the person requires fulltime assistance and care. Advanced dementia symptoms:

• Loss of the ability to communicate
• Being unable to recall things for even a short time (a few minutes) or recognise family and friends, and being unable to recognise familiar everyday objects
• Loss of mobility, becoming bedridden towards the end of life
• Increasing restlessness at night and disturbed sleep
• Becoming increasingly hostile and aggressive
• Losing touch with reality, for example, searching for a long-dead relative
• Incontinence and loss of control over bodily functions
• Increased susceptibility to infections

However, it is important to remember that some abilities remain, although many are lost as the disease progresses. Sense of touch and hearing, and the ability to respond to emotion often remain until the end. The third stage of dementia leads to eventual death Activity The stages of dementia

Watch the following video about the stages of dementia:

‘What Are the Different Stages of Dementia? The 3-Stage and 7-Stage Models Explained’ by Dementia Careblazers

Dementia is a progressive neurological condition that affects cognitive abilities, memory, and behavior. The progression of dementia can have a significant impact on the person living with dementia, as well as their family and caregivers.

Impact on Individual

While there are many variations in the individual experience of dementia, there are also some common themes and responses. Dementia affects the whole person: how they think, how they feel, their physical being and their spirituality.

Psychosocial implication and other factors that affect the individual

Accommodation

One of the most significant implications of dementia on accommodation is that it can make it difficult for individuals to live independently. As the condition progresses, individuals may struggle with basic daily activities such as cooking, cleaning, and personal hygiene. This can lead to feelings of frustration, isolation, and a loss of identity and self-worth. This includes:

1. Increased Dependence on Caregivers: This can lead to changes in their roles and relationships with caregivers, and may impact their sense of independence and autonomy.
2. Emotional Distress: Accommodation challenges, such as difficulties navigating within the home, confusion with the layout or location of familiar objects, or changes in the physical environment, can cause emotional distress for individuals with dementia. This may result in increased agitation, anxiety, or confusion, which can affect their emotional well-being.
3. Reduced Safety and Security: due to increasing risk of accidents or injuries, such as falls or getting lost. This can cause distress and anxiety.
4. Reduced social interaction: As the person's cognitive abilities decline, they may become less able to interact with others, resulting in reduced social interaction. This can lead to feelings of isolation, loneliness, and depression Overall, the psychosocial implications of dementia in relation to accommodation are significant and can impact an individual's quality of life.

Financial Implications

As well as emotional, psychological and physical impacts, dementia also has financial and practical impacts. As the person’s ability to function independently decreases and more supports are needed, the family faces financial and practical impacts that may include the cost of services, time commitments and practical issues such as modifications to the person’s accommodation if they remain living in their own home.

1. Feelings of helplessness and stress: Financial strain can lead to feelings of helplessness, stress, and anxiety, which can impact the person's overall well-being.
2. Social isolation: As the person's finances become more limited, they may have to cut back on social activities and become more isolated, which can further impact their psychosocial well-being.
3. Reduced sense of self-worth: Financial difficulties can cause a person to feel less valuable or important, which can impact their self-esteem and sense of self-worth.
4. Increased dependence on others: As the person's finances become more limited, they may become more dependent on others for financial support, which can impact their independence and autonomy

Heightened Vulnerability to Abuse and Exploitation

Studies have found that individuals with dementia are at increased risk of abuse and exploitation compared to those without dementia. This can include physical abuse, sexual abuse, financial exploitation, and neglect The following are some of the ways in which dementia can increase vulnerability to abuse and exploitation:

1. Impaired decision-making: Individuals with dementia may have impaired decision-making abilities, which can make them more susceptible to manipulation and coercion by others (Brandl et al., 2017).
2. Fear and anxiety: The person may experience fear and anxiety due to the possibility of abuse or exploitation, which can lead to feelings of vulnerability and helplessness.
3. Loss of trust: If the person has experienced abuse or exploitation in the past or is aware of it happening to others, it can lead to a loss of trust in others and a reluctance to engage in social activities.
4. Powerlessness: The person with dementia may feel powerless and unable to protect themselves from abuse or exploitation, which can lead to feelings of helplessness and anxiety.
5. Social isolation: Experiences of abuse or exploitation may cause the person with dementia to withdraw from social interactions or become isolated, which can exacerbate feelings of loneliness and reduce quality of life.

Impact of Isolation

Isolation can have significant negative impacts on the well-being of a person with dementia. Some of these impacts may include:

1. Cognitive decline: Social isolation can accelerate cognitive decline in individuals with dementia. Lack of social interaction and stimulation can lead to a decline in cognitive abilities such as memory, attention, and problem-solving skills.
2. Depression and anxiety: Isolation can contribute to feelings of depression and anxiety in people with dementia. Lack of social interaction and support can lead to feelings of loneliness, helplessness, and hopelessness.
3. Increased agitation and aggression: Social isolation can contribute to increased agitation and aggression in individuals with dementia. Without social interaction and stimulation, individuals may become bored, restless, and irritable.
4. Reduced physical activity: Isolation can also lead to reduced physical activity in people with dementia, which can contribute to a decline in physical health and increased frailty.
5. Poor nutrition: Isolation can impact the ability of individuals with dementia to maintain a healthy diet. They may not have access to nutritious food or may forget to eat altogether.
6. Increased dependence: Isolation can contribute to an increased dependence on caregivers and healthcare professionals. Lack of social interaction and stimulation can lead to a loss of independence and a reduced ability to perform activities of daily living.
7. Reduced quality of life: Overall, social isolation can significantly impact the quality of life of individuals with dementia. They may feel lonely, bored, and unfulfilled, which can contribute to a reduced sense of well-being. It is important for caregivers and healthcare professionals to recognize the negative impacts of isolation on individuals with dementia and to develop strategies to promote social interaction and engagement to mitigate these impacts.

Impact of Diagnosis

The impact of being diagnosed with dementia can produce a grief response like that experienced in relation to any significant loss. Accepting and adjusting to the diagnosis is a process that can take time as the person works through the various stages of grief

The Grieving Process

Grief is a natural response to the loss (or threatened loss) of anyone or anything significant to you. Grief affects how we feel, how we think and how we behave. It includes powerful emotions that can affect our whole being and outlook on life. In the case of a diagnosis of dementia, there are multiple potential losses to grieve for, including the loss of identity, loss of relationships, loss of enjoyment of life, loss of independence, loss of status – the list is almost endless. The idea that grief is a process and that people move through stages of grief was introduced by Elisabeth Kübler-Ross in the 1960s.

She identified five stages of grief:

It is important to remember that not everyone moves through these stages in the same way. Some may skip a stage or experience them in a different order. Some may become ‘stuck’ at a particular stage and be unable to move on. Some may regress to earlier stages and re-experience them in a cyclic fashion. There is no ‘right’ way to experience grief and no ‘right’ or ‘wrong’ way to feel – a person simply feels what they feel.

Signs of Grief

Grief is not simply ‘feeling sad’. It affects our whole being and can manifest in a variety of ways, including in emotions, physical symptoms, thoughts and behaviour.

Physical Symptoms

Physical symptoms of grief are similar to the physical symptoms of stress. They may include:

• Headaches, aches and pains
• Changes in appetite
• Nausea and digestive upsets
• Fatigue
• Increased susceptibility to infections
• Sleep disturbances, insomnia and oversleeping

Behavioural Symptoms

Behaviour displayed when feeling grief is similar to signs of depression. The behaviour may include:

• Crying
• Searching (for a lost person, possession, opportunity or relationship)
• Withdrawing from interaction with others, and isolating themselves
• Fretting and worrying (about themselves and/or others)
• Irritability and outbursts of anger
• Apathy and lack of interest
• Questioning (questioning beliefs and perceptions about life, religion and faith).

Emotional Symptoms

Grief affects emotions in a similar way to depression and stress, including experiencing:

• Mood swings
• Anger (at themselves and others, and about the loss itself)
• Fear and anxiety (about the future, about their personal security and about others)
• Guilt (feeling they are in some way to blame)
• Relief (from knowing the worst or because something is over, then feeling guilty about feeling relieved)
• Despair (including feeling powerless)
• Resignation (feeling there is nothing they can do and that they must accept what has happened).

Resources

Watch the following two videos:

‘The Unspoken Impact of Dementia’ by Dementia Australia

‘Living With Dementia’ by Social Care Institute for Excellence (SCIE)

Impact on the Family

Dementia is a condition that not only affects the individual with the disease but also has significant impacts on their family members. The following are some of the ways in which dementia can impact family members:

1. Emotional Distress: Family members of individuals with dementia often experience emotional distress due to the challenges of caring for a loved one with a progressive, incurable disease. This emotional distress can manifest as depression, anxiety, and other mental health conditions (Koukouli, 2018).
2. Increased Caregiver Burden: Family members of individuals with dementia often assume the role of primary caregivers, which can lead to increased caregiver burden. Caregiver burden refers to the physical, emotional, and financial strain that caregivers experience as a result of their caregiving responsibilities. Studies have found that caregiver burden is higher for caregivers of individuals with dementia than for caregivers of individuals with other chronic illnesses (Pinquart & Sörensen, 2011).
3. Financial Strain: Dementia can also have significant financial implications for family members. The cost of care for individuals with dementia is often high, and family members may need to bear the brunt of these costs (Herrmann et al., 2016).
4. Strained Relationships: The challenges of caring for a loved one with dementia can also strain family relationships. Family members may disagree about the best way to care for the individual with dementia, which can lead to conflict and tension within the family (Werner, 2019).
5. Social Isolation: Family members of individuals with dementia may also experience social isolation as a result of their caregiving responsibilities. They may have less time to engage in social activities, which can lead to feelings of loneliness and isolation (van der Lee et al., 2017).

Overall, dementia can have significant impacts on family members, including emotional distress, increased caregiver burden, financial strain, strained relationships, and social isolation. It is important for healthcare professionals to provide support and resources to help family members cope with these challenges and improve their quality of life.

The table below provides a summary of challenges faced by family, carers and the individual and its impact as dementia progresses:

CHALLENGE	Impact on Person with Dementia	Impact of Carers and Families
Depression	They may feel isolated and lonely Depression in the person living with dementia can cause them to become irritable, angry, or withdrawn.	Family members and carers may experience emotional distress as they witness the person's decline and struggle to provide care1. Family members and carers may experience emotional distress as they witness the person's decline and struggle to provide care Financial and relationship strain: It can strain their relationships with family members and carers. This can lead to feelings of frustration, resentment, and guilt. Increased Caregiver Burden: Depression can worsen the person's cognitive and functional abilities, which can increase the caregiver burden. This can lead to feelings of frustration, exhaustion, and burnout among family members and carers.
Loss and Grief	Emotional distress and sense of Loss: As the person's dementia progresses, they may lose their ability to recognize their loved ones, communicate effectively, or engage in activities they once enjoyed. This can lead to a sense of loss and grief for both the person with dementia and their carer. Cognitive changes: Loss and grief can affect a person's ability to think clearly, concentrate, and remember. This can lead to further confusion and frustration, which can worsen the symptoms of dementia. Physical changes: Grief and stress can affect a person's physical health, including their sleep patterns, appetite, and overall wellbeing. This can make it more difficult for individuals with dementia to cope with their condition.	Changes in Roles and Relationships: The person's decline may lead to changes in roles and relationships within the family. This can lead to feelings of resentment, guilt, and stress. Increased Caregiver Burden: Loss and grieving can increase the caregiver burden, as the carer may need to provide more emotional and practical support to the person with dementia. This can lead to feelings of exhaustion, burnout, and stress.
Anger and Agitation	Person may face social isolation: If the person with dementia displays aggressive behavior, others may be reluctant to interact with them, which can lead to social isolation and loneliness. Physical Harm: If the person with dementia becomes physically aggressive, they may pose a risk to themselves or others. This can lead to injuries and medical complications. Emotional distress: Anger or aggression can cause emotional distress for the person with dementia. They may feel confused, frustrated, and overwhelmed by their own behavior, which can lead to further agitation.	Physical Harm: If the person with dementia becomes physically aggressive, their carer may be at risk of physical harm. This can lead to injuries and medical complications for the carer. Emotional distress and social isolation: Aggressive behavior can cause emotional distress for the carer, who may feel frightened, frustrated, and overwhelmed.
Despair	Despair can worsen the person's cognitive and functional decline, as they may lose motivation and interest in participating in activities. Despair can cause emotional distress for the person with dementia, who may feel hopeless and overwhelmed by their cognitive and functional decline.	Despair can cause emotional distress for the carer, who may feel helpless and frustrated by their inability to improve the person's condition. Increased Caregiver Burden: Despair can increase the caregiver burden, as the carer may need to provide more emotional and practical support to the person with dementia. Social Isolation: Caring for a person with dementia can be isolating, and despair can worsen this isolation as the carer may have limited time and energy for social activities.
Delirium	Increased confusion: Delirium can cause a sudden and severe change in a person's mental abilities, making them feel more disoriented and confused. Behavioral changes: The person with dementia may become more agitated or aggressive as a result of the delirium, making it challenging for caregivers to manage their behavior. Increased risk of complications: Delirium can lead to a higher risk of falls, infections, and other complications, which can be especially dangerous for individuals with dementia.	Increased stress: Caring for someone with delirium can be challenging and stressful, as caregivers may need to provide additional support and supervision to manage the person's behavior and ensure their safety. Increased workload: Caregivers may need to spend more time with the person with dementia, monitoring their behavior and providing assistance with activities of daily living. Emotional toll: Delirium can be distressing for caregivers to witness, especially if the person with dementia is experiencing significant behavioral changes or appears to be in distress. This can lead to emotional exhaustion and burnout, which can affect their ability to provide care over time.
Social Embarrasment	Reduced social interaction: Social embarrassment can cause a person with dementia to withdraw from social situations, which can lead to feelings of isolation and loneliness. Negative self-image: Social embarrassment can lead to negative self-image and self-esteem issues, causing the person with dementia to feel ashamed or embarrassed about their condition. Increased anxiety and stress: The fear of being embarrassed in social situations can cause anxiety and stress, making it more difficult for the person with dementia to enjoy their life and engage in social activities.	Increased stress and anxiety: Caregivers may feel stressed and anxious when they witness the person with dementia experiencing social embarrassment or difficulty interacting with others. Difficulty managing behavior: Social embarrassment can lead to challenging behavior in the person with dementia, which can be difficult for caregivers to manage. Reduced social support: Social embarrassment can lead to reduced social support for both the person with dementia and their caregiver, as others may feel uncomfortable or unsure how to interact with them.
Dysphasia	Malnutrition and dehydration: Dysphagia can make it difficult for the person with dementia to eat and drink enough to meet their nutritional needs, leading to malnutrition and dehydration. Increased risk of aspiration pneumonia: Dysphagia increases the risk of food or liquid entering the lungs, which can lead to aspiration pneumonia, a serious and potentially life-threatening condition. Reduced quality of life: Dysphagia can be uncomfortable and distressing, making it difficult for the person with dementia to enjoy meals and engage in social activities involving food and drink.	Increased risk of choking: Caregivers may worry about the person with dementia choking during meals, which can be a source of stress and anxiety. Increased workload: Caregivers may need to prepare special meals, puree or chop food, or provide assistance with feeding to ensure the person with dementia is getting the nutrition they need. Emotional toll: Caregivers may feel upset or distressed when they witness the person with dementia experiencing difficulty swallowing or struggling to eat, which can be emotionally taxing over time.
Loss of speech and cognition	Reduced ability to communicate: Loss of speech and cognitive function can make it difficult for the person with dementia to communicate their needs and preferences, leading to frustration and isolation. Increased dependence on others: The person with dementia may become more dependent on others for assistance with activities of daily living and may require more intensive care. Reduced quality of life: Loss of speech and cognitive function can make it difficult for the person with dementia to engage in social activities or pursue hobbies and interests, leading to a reduced quality of life.	Increased workload: Caregivers may need to provide more assistance with daily living activities and may need to spend more time with the person with dementia to provide support and supervision. Emotional toll: Loss of speech and cognitive function can be distressing for caregivers to witness, especially if the person with dementia becomes frustrated or agitated as a result. Need for additional support: Caregivers may require additional support from healthcare providers or other caregivers to manage the person's care and ensure their safety.
Loss of inhibition	Social challenges: Loss of inhibition can lead to social challenges, including inappropriate behavior or language in public, which can cause embarrassment or discomfort for the person with dementia and those around them. Risk of injury: Loss of inhibition can lead to risky behavior, such as wandering or exploring dangerous areas, which can put the person with dementia at risk of injury. Impaired decision-making: Loss of inhibition can impair the person's decision-making abilities, making it difficult for them to make safe and appropriate choices.	Increased stress and anxiety: Caregivers may feel stressed and anxious when they witness the person with dementia engaging in inappropriate or risky behavior. Difficulty managing behavior: Loss of inhibition can lead to challenging behavior in the person with dementia, which can be difficult for caregivers to manage. Social isolation: Caregivers may become more isolated as they avoid social situations due to concerns about the person with dementia's behavior.

There are several other factors also listed below:

Isolation	Reduced quality of life: Isolation can lead to a reduced quality of life for the person with dementia, as they may have fewer opportunities to engage in social activities or spend time with loved ones. Increased risk of depression and anxiety: Isolation can contribute to feelings of loneliness, depression, and anxiety in the person with dementia. Worsening cognitive function: Isolation can lead to a lack of stimulation and social interaction, which can worsen the person's cognitive function over time.	Increased stress and isolation: Caregivers may feel isolated and lonely as they spend more time caring for the person with dementia and may have fewer opportunities to engage in social activities themselves. Burnout and caregiver strain: Isolation can contribute to caregiver strain and burnout, which can lead to physical and emotional exhaustion, and impact the caregiver's ability to provide effective care. Reduced social support: Isolation can lead to a lack of social support for caregivers, which can make it more difficult to cope with the challenges of caregiving.
Self Harm	Physical injury: Self-harm can cause physical injury to the person with dementia, which may require medical attention and can lead to complications. Increased risk of infection: Self-harm can increase the risk of infection if wounds are not properly cared for. Psychological distress: Self-harm can be a sign of underlying psychological distress, such as anxiety or depression, which can further affect the person's well-being and quality of life.	Emotional distress: Witnessing self-harm in the person with dementia can be emotionally distressing for the caregiver, leading to feelings of guilt, sadness, or anxiety. Increased workload: Caregivers may need to provide additional care and supervision to prevent self-harm, which can increase their workload and stress levels. Social isolation: Caregivers may become more socially isolated if they avoid social situations due to concerns about the person with dementia's behavior.
Social devaluation	Reduced self-esteem: Social devaluation can lead to reduced self-esteem in the person with dementia, as they may feel stigmatized and devalued by society. Isolation: Social devaluation can lead to social isolation for the person with dementia, as others may avoid interacting with them due to stigma and lack of understanding. Barriers to care: Social devaluation can make it difficult for individuals with dementia to access appropriate care and support, as healthcare providers may hold negative attitudes towards them.	Emotional burden: Social devaluation can place an emotional burden on caregivers, who may feel stigmatized and isolated themselves due to their association with the person with dementia. Lack of support: Social devaluation can make it difficult for caregivers to access support and resources, as others may not understand or appreciate the challenges they face. Increased stress: Social devaluation can increase stress and anxiety in caregivers, who may worry about the well-being of the person with dementia and the lack of understanding and support from society.
Suicidal ideation	Increased risk of self-harm: Suicidal ideation can increase the person's risk of self-harm or suicide, which can be a serious concern for their safety. Psychological distress: Suicidal thoughts can cause significant psychological distress, including anxiety, depression, and feelings of hopelessness. Communication difficulties: The person with dementia may have difficulty expressing their thoughts and feelings, which can make it challenging to address and manage their suicidal ideation.	Emotional distress: Caregivers may experience significant emotional distress when they witness or learn about the person's suicidal ideation. Increased responsibility: Caregivers may feel an increased responsibility to monitor and manage the person's safety, which can be challenging and stressful. Need for additional support: Caregivers may require additional support from healthcare providers or other caregivers to manage the person's care and ensure their safety.

It is important for care givers and family members to be aware of these impacts and seek support and resources to manage them.

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