Dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their carers, families and society at large. There is often a lack of awareness and understanding of dementia, resulting in stigmatization and barriers to diagnosis and care.
By the end of this topic, you will understand:
- How dementia progresses over time
- The impacts of dementia on the individual and their family.
- Psychosocial implications of progression 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
Answer the following questions:
- Which are the two most common models for describing the stages of dementia?
- Which do you think is more useful? Why?
- What are the key considerations when discussing stages of dementia? Outline key features of each of the stages in the three-stage model, giving examples to illustrate your answer.
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:
- 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.
- 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.
- Reduced Safety and Security: due to increasing risk of accidents or injuries, such as falls or getting lost. This can cause distress and anxiety.
- 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.
- 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.
- 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.
- 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.
- 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:
- 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).
- 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.
- 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.
- 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.
- 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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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)
Answer the following questions:
- What feelings did the people in the videos identify when they were diagnosed with dementia? Try to quote some examples of what they said.
- How did they think the diagnosis would affect their lives? What were their expectations about how their lives might change?
- What were their concerns?
- How did they think other people would see them?
- What did you learn about the impact of dementia on individuals from watching these two videos?
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:
- 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).
- 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).
- 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).
- 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).
- 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 |
|
|
Loss and Grief |
|
|
Anger and Agitation |
|
|
Despair |
|
|
Delirium |
|
|
Social Embarrasment |
|
|
Dysphasia |
|
|
Loss of speech and cognition |
|
|
Loss of inhibition |
|
|
There are several other factors also listed below:
Isolation |
|
|
Self Harm |
|
|
Social devaluation |
|
|
Suicidal ideation |
|
|
It is important for care givers and family members to be aware of these impacts and seek support and resources to manage them.
Now its your turn to test your knowledge of this topic