10-10-23 - Dementia and its effects on patients, family and carers

Question 1

Learning outcomes

Answer 1

• Describe the impact of dementia on everyday functioning
• Understand the impact of dementia on the person with the diagnosis
• Outline the impact of dementia on the family of the person with a diagnosis
• Be aware of the potential impact of dementia on family relationships
• Understand why caregiving for people with dementia is difficult

Question 2

What is the term dementia a general term for?

What 4 conditions does dementia include?

Answer 2

• Dementia is a general term for loss of memory, language, problem-solving and other thinking abilities
• 4 conditions dementia includes:
  1) Alzheimer’s
  2) Vascular dementia
  3) Lewy body
  4) Frontotemporal

Question 3

What are 9 potential symptoms of dementia?

Answer 3

• 9 potential symptoms of dementia:
  1) Memory loss
  2) Thinking speed
  3) Mental sharpness and quickness
  4) Language, such as using words incorrectly, or trouble speaking
  5) Understanding
  6) Judgement
  7) Mood
  8) Movement
  9) Difficulties doing daily activities

Question 4

What Are 11 risk factors for dementia?

Answer 4

• 11 risk factors for dementia:
  1) Age
  2) Education
  3) History of diabetes
  4) History of/ current depression
  5) History of stroke
  6) Parental dementia
  7) Economic disadvantage (Townsend deprivation index)
  8) High blood pressure
  9) High cholesterol
  10) Living alone
  11) Male sex.

Question 5

Prevalence of dementia in Scotland

Answer 5

• Prevalence of dementia in Scotland:
• According to Alzheimer Scotland, it is estimated that there are 90,000 people with dementia in Scotland (Alzheimer Scotland, 2023)
• Around 3,000 of these people will be under the age of 65 years old
• Projected estimates show a 50% increase in the number of people with dementia over 65 over the next 20 years (Scottish Government, 2023)
• Some estimates suggest 1 in 3 people born today will go on to develop dementia (Scottish Government, 2023)

Question 6

Policy – Dementia Strategy for Scotland (2023)

Answer 6

• Policy – Dementia Strategy for Scotland (2023):
• The new Dementia Strategy for Scotland (2023) is a 10-year vision for change
• The policy was developed in collaboration with people with lived experience and wider partners
• Focus on how to improve service delivery, and enhancing community supports
• The cost of dementia to the UK is currently £34.7 billion a year which works out as an average annual cost of £32,250 per person with dementia (Alzheimer’s Society, 2020)

Question 7

What are the 3 stages of dementia?

Answer 7

• 3 stages of dementia:
  1) Early stage (Alzheimer’s)
  2) Middle stage
  3) Late stage

Question 8

Early stages of dementia – Alzehimer’s.

How does Alzheimer’s disease usually begin?

What are these signs often mistakenly attributed to?

What are 6 potential early stage symptoms of dementia?

Answer 8

• Early stages of dementia – Alzehimer’s
• Alzheimer’s disease usually begins with very minor changes in the person’s abilities or behaviour
• Such signs can often be mistakenly attributed to stress or a bereavement or to the normal process of ageing
• It is often only when looking back that it is realised that these signs were probably the beginnings of dementia
• 6 potential early-stage symptoms of dementia:

1) Loss of memory of recent events

2) Patients may start to have poor orientation, getting lost even in places that would normally be familiar to them

3) Concentrating, planning or organising: e.g., difficulties making decisions, solving problems, or carrying out a sequence of tasks (e.g., cooking a meal)

4) Language: e.g., difficulties following a conversation or finding the right word for something.

5) Orientation: e.g., losing track of the day or date,

6) Mood: changes in mood, they may become frustrated or irritable, apathetic or withdrawn, anxious, easily upset or unusually sad.

Question 9

Middle stage of dementia.

How do symptoms change as Alzheimer’s progresses?

What will the person require?

What are 3 potential middle stage symptoms of dementia?

Answer 9

• Middle stage of dementia
• As Alzheimer’s disease progresses, the changes become more marked
• The person will need more support to help them manage their day-to-day life.
• 3 potential middle stage symptoms of dementia:

1) Worsening memory problems, more forgetful and remembering new information becomes increasingly difficult, this can lead to repetitive asking of the same question

2) Can also lead to difficulties with toileting as people forget and without prompts may soil themselves

3) The memory problems can present as difficulty in recognizing people, including close family members

Question 10

Late stages of dementia.

What will the person require at this point?

Where is this help often provided?

What are 4 potential late-stage symptoms of dementia?

Answer 10

• Late stages of dementia
• At this stage, the person with Alzheimer’s will need even more help and will gradually become dependent on others for all aspects of their care including eating, washing and dressing
• This support can be provided by care at home, but it more often provided in a care home setting
• 4 potential late-stage symptoms of dementia:

1) Memory difficulties are very severe, with very limited memory of recent events

2) They are likely to have significant problems recognizing previously familiar faces
3

3) Communication can be very difficult as their word repertoire diminishes and their understanding of words becomes more limited

4) Behaviour changes persist, including delusions and hallucinations, they may feel threatened, resulting in agitation and aggressive behaviour

Question 11

What 9 psychological and emotional difficulties can those with dementia deal with?

Answer 11

• 9 psychological and emotional difficulties can those with dementia deal with:

1) Shock, particularly if the diagnosis was unexpected

2) Relief that they now know what is causing their symptoms * disbelief – especially in the case of young onset dementia (where symptoms develop before the age of 65)

3) Anxiety, low mood and/or depression

4) Feelings of being overwhelmed

5) Grief

6) Feelings of helplessness/hopelessness

7) Worry about the future

8) Loss of confidence

Question 12

What are 5 technological aids that allow dementia patients to stay independent?

Answer 12

• 5 technological aids that allow dementia patients to stay independent:

1) Portable alarms or fixed position alarms – when activated these make a high-pitched sound to alert someone

2) Movement sensors – to detect, for instance, when someone has fallen out of bed

3) Smoke and fire alarms

4) Telecare systems – sensors or detectors that automatically send a signal to a carer or monitoring centre by phone

5) Pill dispensers – release medication at appropriate intervals

Question 13

What are 4 Daily living aids that help dementia patients with day-to-day tasks?

What are 3 other bodies that support those with dementia?

How can this support be accessed?

Answer 13

• 4 Daily living aids that help dementia patients with day-to-day tasks:

1) Clocks showing the day and date as well as the time

2) Reminder devices to prompt when to take medication or appointment alerts

3) Telephones with big buttons – these can be pre-programmed with frequently used numbers

4) Music players and radios with easy-to-use controls

• 3 other bodies that support those with dementia:
  1) Support from local council
  2) Adult social services and charities
  3) Local community support
• This support can be accessed via a care assessment

Question 14

What are sandwich generation carers?

Why is this problematic?

Answer 14

• Sandwich generation carers are of working age, and look after children as well as elderly parents
• This places significant challenges on individuals and families; welfare services, as well as the friends, or family members who care for them; and businesses

Question 15

Dementia carers – statistics

Answer 15

• Dementia carers – statistics
• Alzheimer’s Society estimates there are 700,000 unpaid carers of people living with dementia in the UK (Alzheimer’s Society, 2021)

Question 16

What are 4 reasons carers care?

Answer 16

• 4 reasons carers care:
  1) Emotional bond with person with dementia
  2) Sense of duty / obligation
  3) Cultural expectations
  4) No alternative

Question 17

What are 5 advantages of caring?

Answer 17

• 5 advantages of caring:
  1) Satisfaction in the role
  2) Strengthening of family relationships
  3) Increased sense of self worth
  4) Increased understanding and empathy
  5) Rewarding (including companionship)

Question 18

What 5 things do carers and families do for their loved ones with dementia?

Answer 18

• 5 things carers and families do for their loved ones with dementia:

1) Helping someone with everyday tasks such as food shopping, meal preparation, dressing, personal finance

2) Providing help with personal care (e.g., full physical care with bathing, toileting, eating, and drinking)

3) Providing emotional support

4) Prompting and reminding of events, such as taking medication, or tasks to maintain independence

5) Responding to and managing behavioural disturbance

Question 19

What are 10 difficulties that carers and families of those with dementia face?

Answer 19

• 10 difficulties that carers and families of those with dementia face:
  1) Depression/anxiety
  2) Lower quality of life/wellbeing
  3) Worse health outcomes: e.g., obesity, higher metabolic risk, higher levels of stress hormones, compromised immune system, cognitive decline, less preventive health behaviours
  4) Sleep problems
  5) Socially isolated
  6) Role strain – trying to manage multiple caring duties
  7) Family conflict
  8) Financial strain
  9) Sense of loss/grief
  10) Guilt, resentment, anger

Question 20

Insight to carers research

Answer 20

• Insight to carers research:
• The emotional impact of providing care for a loved one is consistently highlighted in the research:
• In addition to depressive symptoms, carers in many studies express feelings of grief, loss, isolation, frustration, uncertainty, stress, fears about the future, and a low sense of self-esteem and self-efficacy (Yu et al., 2016; Cabote et al., 2015; Yong and Price, 2014)
• Carers also report feeling overwhelmed, helpless or abandoned by being left to care for their family member (Casadro et al., 2015; Samuelsson et al., 2001)
• O’Dwyer et al (2013), looking at suicidal ideation among carers, found this risk to be increased by existing mental or physical health conditions in the carer and by conflict with family members or professionals, which can become an additional tension carers may need to manage

Question 21

What are 3 different types of support for carers?

Answer 21

• 3 different types of support for carers:

1) Respite care
* Respite programs provide planned short-term and time-limited breaks for families and other unpaid caregivers
* This can be:
* Day care
* In-home companion
* Brief in-patient stays

2) Psychological interventions
* Support groups
* Individual or family interventions

3) Occupational therapy
* Recommending suitable exercise/changes around home
* Assist with personal care training
* Improving safety at home
* Info support on accessing other support
* Advising carers

Question 22

What are 3 barriers to support for carers?

Answer 22

• 3 barriers to support for carers:

1) Lack of adequate information:
* Carers often look for advice, information and support from a range of sources, but find it difficult to evaluate the usefulness of this information and identify trustworthy services (Macleod et al., 2017)
* For people from BAME communities (Lawrence et al., 2008) and LGBT people (Barnett et al., 2015) distrust of services can be a key barrier due to discrimination

2) Responsiveness of services:
* The needs of carers change throughout their caring journey, and it is important that the support they need is available at the right time…
* Anticipating needs ahead of time can be challenging for caregivers because the person they are caring for may experience a gradual accumulation of symptoms rather than a distinct ‘threshold moment’ that prompts them to seek assistance (Lee et al., 2016).

3) ‘Carer’ identity
* Many carers may struggle to identify with the label of ‘carer’, and fear the loss of their own selfidentity (Kim et al., 2016)
* This may be the case for those who were caring for a spouse or partner, who often viewed caregiving as a continuation of the spousal role
* As a result, carers may not recognise that they are eligible for support in their caring role and may be reluctant to undertake training or other, more ‘professionalised’ elements of support.

Question 23

Conclusion/summary

Answer 23

• Conclusion/summary
• To be aware of the importance of emotional and social needs
• Be aware of the diversity of carers and caring contexts, so that responses are tailored to individual needs and circumstances
• To provide ‘better’ support, without assuming that carers can continue in their caring role…
• The need to tackle stigma and social isolation, and to challenge cultural assumptions about the nature of care
• The overriding importance of relationships – between the carer and the person being cared for, between members of local communities, and between the family and formal services