dementia Flashcards
1
Q
what is dementia
A
- umbrella term for a group of cognitive symptoms including memory loss, difficulties with language, thinking, reasoning and problem solving. These symptoms are caused by several different progressive brain diseases.
2
Q
what are the progressive brain diseases following dementia
A
Alzheimer’s disease,
vascular dementia,
Dementia with Lewy bodies fronto-temporal dementia
posterior cortical atrophy
3
Q
what is alzhemiers
A
- most common kind of dementia and accounts for approximately 60% of all dementias.
- Early AD is associated with difficulty remembering recent events, difficulty finding words, finding it difficult to know where you are.
4
Q
what is vascular dementia
A
- Vascular dementia is the second most common type of dementia.
- caused by damage to the blood supply of the brain; either blood leaks on its way to brain cells or is blocked from reaching cells.
- effects depend on what part of brain is affected
5
Q
what is mixed dementia
A
- Mixed dementia is a term used to describe people who have both Alzheimer’s disease and vascular dementia.
6
Q
what is dementia with lewy bodies
A
- 10% of ppl with dementia
- one of its defining characteristics is fluctuating awareness and alertness.
- symptoms include visual impairment, mostly mistakes in interpretation of visual information and hallucinations.
- similar symptoms with Parkinson’s (tremor and muscle stiffness)
- memory loss is less evident
7
Q
whats fronto-temporal dementia
A
- 2% of dementia cases
- predominantly affects people under the age of 65 years.
- frontal and temporal lobe affected
- changes in personality, behaviour and language.
- difficulties with language
8
Q
3% of cause of dementia, for example:
Creutzfeldt-Jakob disease, a rare brain disorder
Huntington’s disease, an inherited, progressive brain disease
A
9
Q
why is early diagnosis of dementia important
A
- knowing the type of dementia the person has can help you to better understand why the person is doing what they do, what retained abilities they have and why they have difficulty doing some things.
- help the person understand the symptoms that they are experiencing
- allow for access to advice and support
- allow access to treatments that can slow down the progression of the condition
- provide an opportunity to prepare for the future and plan ahead
10
Q
Dementia is a progressive condition. This means that the symptoms associated with dementia will get worse over time.
A
10
Q
Depression is characterised by feelings of low mood which go on for a while.
Symptoms of depression can be similar to those of dementia, such as forgetfulness and having difficulty making decisions.
Depression can occur alongside dementia and is treatable
A
11
Q
Delirium is a temporary, short-term state of confusion. It has a range of causes, most commonly infection (e.g. urinary or respiratory), drug side-effects or dehydration.
Delirium can occur alongside dementia and is treatable.
A
12
Q
what are 6 psychological needs that those with dementia will feel more intensely
A
- comfort
- identity
- attachment
- occupation
- inclusion
- love
13
Q
As people lose the ability to communicate verbally, it can be even more difficult to communicate these distressing emotions other than through their behaviour. As such, it is even more important that we seek to understand a person’s non-verbal communication.
A
14
Q
what are some of the well known consequences of caring for a loved one with dementia
A
- exhaustion
- role changes
- changes in relationship
- social isolation
- loneliness
15
Q
Things that help people to live as well as possible with dementia include:
Companionship
A sense of belonging
Being out in the world (Trevor)
Being social (listen to Trevor talk about how he enjoys the singing group)
Having help to continue doing things you always did
Feeling valued
Recognising that dementia is not the end (Wendy describes her attitude)
Having a chance to contribute (Sue)
Feeling understood
A
16
Q
People living with advanced dementia are at particular risk of being socially excluded
A
16
Q
whats a rights based approach to dementia care
A
A rights-based approach ensures good quality care and support which respects people’s human rights including the right to privacy, family life and liberty, and to be treated with dignity, throughout the journey of living with dementia regardless of where we live or receive care and support.
17
Q
in which law states: it is legally binding that people with dementia and their family carers are treated with dignity, and receive care and support that is based on individual need.
A
equality act of 2010
18
Q
what are the 9 protected characteristics in the equality act
A
- race
- sexual orientation
- religion
- age
- disability
- gender reassignment
- marriage
- pregnancy
19
Q
This rights-based approach to the care of people with dementia is promoted by:
World Health Organization
Alzheimer’s Disease International
Alzheimer Europe
Alzheimer’s Society
Dementia Alliance International
A
20
Q
The Alzheimer’s Society includes the following in their campaign to ensure the human rights of people affected by dementia.
End discrimination because of reduced mental capacity.
End age discrimination towards older people.
End age discrimination towards younger people.
Improved support for people from black, Asian and minority ethnic (BAME) communities.
Improved care and support.
Robust action on abuse.
Fairer care funding.
Continued action on inappropriate prescription of antipsychotic drugs.
A
21
Q
As dementia progresses eating and drinking can become more difficult for people living with dementia. This may be due to the reduced ability to smell and see.
Dementia can change how flavours are recognised. Taste and sense of smell change naturally with the ageing process.
As dementia progresses, eating and drinking preferences and habits may change. As a result many people can become at risk of malnutrition and dehydration.
A
22
Q
A central focus in person-centred care is finding out and adopting the person’s perspective, to empathise and see the world through their eyes. This is especially necessary when the person is distressed.
A
23
how is advanced care planning used to help meet the needs of dementia patients
Advance care planning is an approach to making sure that a person's wishes, needs and preferences for care are known, recorded and acted upon.
24
Care providers have a central role to play in communicating with people living with dementia and their families.
Personality is one of many factors that influence a person's experience of living with dementia; other factors include physical health, life history, brain disease, the nature and quality of interactions and relationships that the person has.
25
what are some barriers that can prevent a dementia patient from seeking help
stigma: A person may be afraid of negative reactions from family, friends and neighbours or concerned that they will be treated differently, be less valued and experience discrimination in health and social care
lack of insight: A person may lack insight or awareness into the severity of the changes they are experiencing
cultural differences: A person may come from a cultural or ethnic background which attributes these changes to something other than brain disease, such as a failing in past life or some kind of retribution for a moral affront
ignorance: A person may perceive the changes to be a normal part of changing and/or associated with other ongoing health problems
apprehension: A person may feel apprehensive about engaging with healthcare professionals and services
prior experiences: A person may have prior experiences of family members with dementia who did not receive high quality care
denial: A person may not wish to confront the changes they are experiencing and may rather deny what is happening
Professional barriers
Many general practitioners are aware of the stigma surrounding dementia and are reluctant to assign a person with dementia this label.
A UK study [3] (read details regarding the reference) indicated that the perceptions of the stigma associated with dementia affected the degree to which practitioners communicated with patients about their dementia. Some practitioners described dementia as being 'in a different awful reality' due to 'loss of self, power and cognitive functions' and 'worse than death'.
Another study showed that GPs think people with dementia often struggle to understand what their diagnosis means.
One approach to supporting primary care practitioners is to emphasise the importance and increasing availability of post-diagnostic support services for people living with dementia [4] (read details regarding the reference).
Family barriers
Different members of the family may have different perspectives on the changes the person is experiencing.
For example, a daughter may be adamant that her mother should go to the doctor to undergo an assessment, while her father sees no need and says that they are managing fine.
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26
What 2 questions need to be addressed when diagnosing dementia
- Are the person's symptoms consistent with a progressive brain disease?
- If so, which type of progressive brain disease is most likely to be causing these symptoms?
27
where would the assessment process for dementia diagnosis take place
GP or memory clinic
28
what typically goes on during the assessment process of dementia diagnosis
a medical and personal history about the symptoms the person is experiencing
a physical examination (including blood tests) to rule out other conditions which may cause changes
cognitive assessment (including tests of recent memory, spatial awareness, abstract reasoning)
assessment of mood (as depression can lead to changes in cognition)
Less commonly the person may have a brain scan.
29
According to the Memory Services National Accreditation Programme [5] (read details regarding the reference), memory assessment services must ensure that?..
- the person understands the process:
- appropriate consent is gained
- the person is involved in decision making:
- the person is consulted about the diagnosis:
30
what are 7 things that are analysed in multi-dimensional history for a diagnosis of dementia
- life history
- family context
- current and prior medical conditions
- history of changes in cognition and or behaviour
- risks
- mental health issues
- personality
31
what 5 blood tests are undertaken abiding by NICE for dementia diagnosis?
- routine blood tests including full blood count
- biochemistry tests (for example, calcium, glucose, renal and liver function)
- thyroid function tests
serum vitamin B12 and folate levels
- mid-stream urine test (if delirium is a possibility)
32
what are the cognitive changes found in a dementia patient under the table of 4 A's?
- amnesia
- aphasia
- agnosia
- apraxia
33
define amnesia
difficulty in recalling certain details from memory.
34
define agnosia
difficulty in recognising the things around us, for example, objects, faces, shapes, smells.
35
define apraxia
difficulty in performing certain tasks or movements.
36
When exploring a person's cognitive symptoms, ask about:
amnesia
aphasia
agnosia
apraxia
attention and concentration
37
what are 2 validated measures of depression?
geriatric depression scale
patient health questionnaire
38
what is the geriatric depression scale
tool used to identify depression in older adults
- Choose the best answer for how you felt over the past week:
are you basically satisfied with your life?
do you feel like your life is empty?
do you prefer to stay at home rather than going out and doing things?
do you feel you have more problems with memory than most people?
39
what is the patient health questionnaire
tool used to screen and diagnose selected mental health disorders, for example, depression, anxiety, alcohol, eating and somatoform disorders.
- Over the last 2 weeks, how often have you been bothered by any of the following:
trouble falling or staying asleep, or sleeping too much?
trouble concentrating on things such as reading the newspaper or watching television?
feeling tired or having little energy?
40
how is brain imaging helpful when dealing with dementia
- provide information about changes in different parts of the brain. This can help in identifying which type of underlying brain disease (dementia) a person may have.
- help with identifying other reasons (e.g. brain tumour) why a person is experiencing changes in cognition and behaviour.
41
what 4 types of brain scan might be undergone for a dementia patient
- Computerised axial tomography (CAT) scans use x-rays to take pictures of the brain.
- Magnetic resonance imaging (MRI) scans use radio signals to create an image of the brain.
- Single photon emission computerised tomography (SPECT) scans look at how blood flows through the brain.
- Electroencephalograms detect and record electrical activity patterns and check for abnormalities.
42
It is important to diagnose young-onset dementia early so that people can discuss the possible effect on their lives and plan their future [5] (read details regarding the reference).
NICE recommends that people with suspected young-onset dementia should be referred to specialist services for diagnosis and support [6
43
what is 2 major issues are associated with dementia in ethnic minorities.
- they presume memory loss is normal aging
- Another issue is that services are often not culturally appropriate and adaptation is required to meet the cultural needs. This could range from availability of translators to using materials which are culturally relevant.
44
Research suggests that people from minority ethnic groups are less likely to present to primary care with memory problems and more likely to fail to attend for appointments in the memory service [7] (read details regarding the reference).
45
during dementia diagnosis, what type of information should be verbally and physically given to patients + family?
- the type of dementia and how it may progress
- which health and social care professionals will be involved in supporting them and how to reach them
- how dementia affects driving
their legal rights and entitlements
their right to reasonable adjustment if they want to work
- sources of support (for example, local support groups, online forum, charities, financial and legal advice services, advocacy services)
46
after dementia diagnosis, what type of support should given to patients + family?
receive access to a memory service (or an equivalent hospital or primary care-based multidisciplinary dementia service) offering a choice of flexible access or pre-arranged appointments to monitor well-being.
47
Alzheimer’s disease: starts slowly with difficulties involving short-term memory and word-finding.
Vascular dementia: caused by disruptions to the blood supply to the brain.
Dementia with Lewy bodies: shares a number of similarities with Parkinson’s disease.
Frontotemporal dementia: associated with behavioural changes as well as memory issues.
48
what 11 factors can affect whether one gets dementia
- smoking
- leaving school early age
- excersise
- smoking
- deafness
- depression
- hypertension
- diet
- being overweight
- diabetes
- alcohol
- social life
49
what are 6 important things to understand regarding nutrition of dementia patients
- varied diet, fruits and veggies
- high calorie diet when appropriate
- rejection of food or over eating
- visually impaired and cant se food hence isnt eating
- environment affecting ability to eat e.g hard to handle
- contrasting colours between food and utensil helps them see food
50
4 key things to know about fluids for dementia patients
- dehydration risk factor for UTI or delirium
- difficulty communication thirst
- even if cups empty, doesnt mean they have durnk enough
- facilitate drinking to promote e.g coloured cup or infused fruit
51
4 key things to know about oral health with dementia patients
- can be issue if help is rejected or they forget to brush
- changes in diet/taste.salivary flow and syrup based medication = increased risk of oral disease
- carer can be used to help oral health or encourage them to look after their oral health
- person with dementia should be given the chance to make decisions about their dental treatment
52
4 key things to know about social engagement
- social engagement reduced agitation and disorientation
- different activity interests for each dementia patients
- not everyone likes to meet in same way or do same things or for same period of time
- activities should be positive and enjoyable
53
People living with dementia may experience stress. Such stress might be related to:
adjusting to loss
having to get used to changes in relationships with family and friends
having symptoms of dementia
having to find new ways to do things
having to find new ways to cope with a situation [11]
54
4 key things to know about exercise for dementia patient
- improves physical health and fitness
- improves self esteem and reduces anxiety and depression
- helps retain daily living skills
- helps dementia patient rest and sleep at right times
55
It is possible to reduce the risk of falls through:
making sure to clean up spills
organising furniture in a way which minimises people being at risk of bumping into it
increasing lighting where possible
wearing clothes which do not trail on the floor
minimising the use of medications which affect eyesight and balance
wearing shoes that fit well
56
The Alzheimer's Society suggest 10 ways to make dressing easier for people living with dementia:
Label the wardrobe and drawers so the person knows where things are – or have glass doors so the person can see where things are in the wardrobe.
Lay clothes out for a person.
Reduce the number of options.
Give the person enough time.
Accept whatever their choice is even if it unusual.
Use photos of the person (perhaps provided by family) so you know how they used like to dress.
Suggest the person has layers of clothes – easy to adjust when temperature fluctuates.
Change clothes regularly.
Make sure the dressing room is comfortable.
Go shopping with the person.
57
what are some co-existing conditions that can have negative impact on dementia patient
- UTI
- respiratory infection
- diabetes
- congestive eheart failure
- dehydration
- delirium
- depression
- dysphagia
58
we can use sight, sound touch and smell to detect early signs of change in dementia patient
59
what is the abbey pain scale
assess pain based on vocalisation, changes in behaviour and body language as well as physical and physiological changes
60
Knowing the person well
As with noticing health conditions, pain can equally be noticed through knowing the person [30] (read details regarding the reference).
61
what 3 ways can we use to manage pain in dementia patients
- excersise
- distraction
- medication
62
what are the 4 psychosocial interventions / therapeutic work done to support distressed dementia patients
- reminisce
- validation
- life story work
- complementary therapies and sensory stimulation (e.g massage)
63
what 6 things can family and friends do to promote health and well being of dementia relative
- communicate
- nutrition
- hydration
- excersise
- social activity
- treatment
64
Between 40 and 70% of people with Alzheimer's disease benefit from taking medications that will help with their cognitive symptoms
65
what are 4 known benefits of Alzheimer patients taking meds
- reduced anxiety
- improvement in motivation, memory and concentration
- improved ability to continue daily activities
- reduce behavioural disturbance
66
In cases where the treatment shows benefit, symptoms improve temporarily (for between 6 and 12 months in most cases) and then gradually worsen over the following months.
67
what are the 2 main types of cognitive enhancers dementia patients use
- acetylcholine esterase inhibitor
- memantine
68
common side effects of acetycholine esterase inhibitor is?
The most common side-effects of acetylcholinesterase inhibitors include [4] (read details regarding the reference):
diarrhoea
muscle cramps
fatigue
nausea
vomiting
insomnia
headache
dizziness
urinary incontinence
69
caution with acetyl choline esterase should be take if patient has cardiovascular, GI, genitourinary, pulmonary or neurological conditions
70
common side effects of memantine include:
Common side-effects of memantine include [4] (read details regarding the reference):
dizziness
headache
feeling out of breath
constipation
drowsiness
high blood pressure
71
caution taking memantine is important for those with epilepsy
72
No mandatory monitoring is required for these medicines. Based on side-effects, cautions and contraindications, the following may be appropriate.
Baseline ECG.
Liver function.
Urea and electrolytes (U&Es) including renal function.
Blood pressure.
Weight.
Pulse.
73
what are the only conditions to allow a dementia patient to take antipsychotic drugs
At risk of harming themselves or others or
Experiencing agitation, hallucinations or delusions that are causing them severe distress
73
what is antipsychotic medication
Antipsychotic medication are a range of medications that are commonly used to treat people with schizophrenia.
- Examples of antipsychotic medications are haloperidol, risperidone and olanzapine.
74
When using antipsychotics on dementia patient:
Use the lowest effective dose and use them for the shortest possible time
Reassess the person at least every 6 weeks to check whether they still need medication
75
what risks come with antipsychotic drugs
Risks of using antipsychotic medication
Can be very damaging for people living with dementia, even fatal for people living with Lewy Body dementia
Are associated with falls
Can potentially lead to a stroke
Increased sedation
Increased confusion and/or delirium
Cardiotoxic effects (e.g. prolonged QTc)
Extra-pyramidal symptoms, such as Parkinsonism and gait disturbance
Accelerated cognitive decline
Increased risk of chest infection
Increased risk of dehydration
75
when do u stop antipsychotic drugs for dementia patient
if the person is not getting a clear ongoing benefit from taking them and
after discussion with the person taking them and their family members or carers (as appropriate)
76
Depression is very common in Alzheimer's disease and has a significant impact on cognitive function as well as increasing carer stress
77
what are antidepressants
used to treat clinical depression or prevent it recurring.
- Examples of antidepressants are sertraline, citalopram, mirtazapine and trazodone which are prescribed for people with dementia who develop behavioural symptoms alongside depression.
78
important factors for use of depression
Antidepressants should be started on a low dose and gradually increased.
Should only be used for a pre-existing severe mental health problem.
There may be a delay of several weeks before the person starts to feel any benefit with the antidepressant.
Antidepressants are usually taken for 6 months or longer.
It is important that the person takes the medication as prescribed, even if the drugs do not appear to be working.
79
risks of taking antidepressants as a dementia patient
tricyclic antidepressant specifically
- cause falls, orthostatic hypotension maybe, increase confusion
80
what is anxiolytic medication
reduced anxiety
81
Lorazepam should only be used on the advice of a specialist for the treatment of behavioural distress associated with dementia
82
risks of antixiolytic meds
cognitive decline
increased frequency of falls
increased frequency of hip fractures
increased confusion
increased sedation
83
benefits of antixyolytic meds
Alleviating anxiety will:
help improve appetite, ensuring good nutrition and improving the person's overall health
improve sleep quality so they feel well rested
improve motivation, helping them take part in activities they enjoy
help them engage with family members and friends and not be socially isolated
make it easier for the family to support the person, by improving their willingness to be involved in everyday life
improve their overall quality of life and their family members' too
84
Benzodiazepines (antixiolytic meds) are widely used but the evidence base is very poor and therefore should be avoided in people with dementia. When benzodiazepines are used, they should be reviewed frequently and used for the shortest period possible (2 to 4 weeks).
85
what is anticonvulsant medication
sometimes referred to as mood stabilisers, are commonly used to treat people with epilepsy.
86
There is only limited evidence to support use and may only be justified where other treatments are contraindicated or ineffective. Anticonvulsants cannot be recommended for routine use in the treatment of behavioural symptoms in dementia at present.
87
what are risks associated with anticonvulsant medication
falls, sedation, gait disturbances, tremor, muscular weakness, low platelet counts, gastrointestinal disorders and urinary tract infections, hyponatraemia, leukopenia, central nervous system (CNS) adverse reactions, fluid retention and allergic skin reactions
88
Sodium valproate (certain form of anticonvulsant) is no more effective than placebo for treating agitation or behavioural disturbances and should not be used in people with dementia.
89
define polypharmacy
use of a large number of medications, commonly considered to be the use of five or more.
90
what is the difference between appropriate and inappropriate polypharmacty
It is important to note that in some cases the combination use of certain medications is beneficial to the older person. This is appropriate polypharmacy.
Inappropriate polypharmacy is when the person takes more drugs than are clinically indicated [17] (read details regarding the reference).
91
what are 4 negatives found with polypharmacy in elderly ppl
Polypharmacy is a concern in older people because there are age-related physiological changes that alter the ways in which drugs are handled by the body. This may include:
reduced renal function
reduced liver function
reduced ratio of body fat to water
delayed stomach emptying
92
Regular reviews of treatment are recommended with the prescriber to determine the appropriateness of use of all medications.
93
Can you list any factors that may lead to inappropriate polypharmacy?
Factors may include [19] (read details regarding the reference):
multiple doctors involved in the person's care
self-medicating
over-the-counter medicines including herbal preparations
medicine dependent culture
medication administration errors
treating medication side-effects with other medications, for example a medication may cause constipation which is then treated with a laxative. Alternatively, it may be appropriate to consider a non-drug approach such as a change in diet
94
As part of the medication review, the person with dementia or their carer should be asked about any side-effects to the medication.
Always ask the person with dementia or their carer if any over-the-counter medication or alternative medicines have been taken in addition to their prescribed medication, as they may contribute to adverse drug reactions.
95
what does NMS stand for and what is it
neuroleptic malignant syndrome
- potentially life threatening conditions characterised by hyperthermia, muscle rigidity, autonomic instability and fluctuation consciousness
96
Using 2 or more medicines with anticholinergic properties can reduce brain function by around 4%
Long-term use of medicines with anticholinergic side-effects by older people can impair cognition and increase falls risk, morbidity and, possibly, mortality. Each person is susceptible to anticholinergic side-effects to a different degree but people living with mild dementias appear to be more susceptible to the cognitive side-effects.
97
review of medication effective ness takes place after 6 weeks
98
what are the 5 psychological needs
- comfort
- identity
- occupation
- attachment
- inclusion
99
Care providers can enhance the independence of a person living with dementia through careful communication and prompting. This means paying close attention to signs, which can be non-verbal, and using language that matches the person's abilities.
100
what 5 things in regards to the physical environment can be adjusted to help a dementia patient
- bold patterns and contrast colours
- good lighting to help see
- lables
- technology e.g reminders, finding lost devices
- switch off unused appliances, remove unnecessary noise or loud noises
101
what 3 things can help ones mobility
- assistive equipment
- transfers e.g sliding board
- excersise
102
Strategies to maintain independence in washing and hygiene may include [5] (read details regarding the reference),[11] (read details regarding the reference):
Maintain the person's former routine for washing as much as possible
Ensure the items and objects are ready at hand before starting
Let the person do as much as they can by themselves
Check the floor is not slippery
Provide adequate lighting
Ensure the taps are easy to turn on and off
Use assistive equipment, e.g. long handled sponges, or bath boards and seats
103
how can you help a dementia person using the toilet
Accidents
Help the person to identify where the toilet is.
Signs or movement sensor lights can help the person to find their way.
Use assistive equipment such as handrails or a raised toilet seat.
Observe if the person is struggling with clothing; clothes can be adapted for easier use.
Incontinence
Use continence aids such as incontinence pads and pull-up pants, and absorbent bed pads.
104
When supporting a person with dressing, a number of simple strategies can be considered [11] (read details regarding the reference):
selecting clothes (give options)
storing clothes (colour order etc)
clothing adaptations (large buttons etc)
equipment aids (dressing stick or shoehorn etc)
105
Strategies to maintain independence in eating may include [5] (read details regarding the reference),[11] (read details regarding the reference):
plan the meals around the person's routine
ensure that frequently used items are easy to access
use eating aids such as cutlery with large handles or non-slip placemats
people with dementia may benefit from crockery that contrasts with the colour of the food being served
contrast between the colours of the tablecloth and plate will also make it easier to see the plate
step-by-step guides, using words and/or photographs for completing tasks such as using the microwave or making a drink
label kitchen cabinets and drawers
106
Supporter: care for the day-to-day needs of the person, such as housekeeping or personal care.
Listener: provide opportunities for the person to share feelings and experiences.
Enabler: create opportunities for people living with dementia to successfully meet their needs.
Advocate: help others to understand the person's needs.
Decision maker: make decisions that support the person's interests.
107
Family members report being affected by dementia in a variety of ways:
emotionally
physically
financially
socially
108
Under the Care Act [20] (read details regarding the reference), family carers have a legal entitlement to assessment and support including:
an assessment of their emotional, psychological and social needs and, where appropriate, interventions to address those needs
access to a comprehensive range of respite/short-break services that meet the needs of both the carer and the person with dementia
109
NICE [21] (read details regarding the reference) describes that carers should be provided with education and skills training from the point of diagnosis which includes:
education about dementia, its symptoms and what changes to expect over time
support with developing personalised strategies and skills
training to develop and enhance their care skills especially with respect to understanding and responding to changes in their relative's behaviour and adapting their communication style to improve interaction
looking after themselves; emotionally, spiritually, as well as their physical and mental health
planning fun and meaningful activities with their relative with dementia
getting information about relevant and accessible services and support
advice about planning for the future
110
Care providers can help by:
talking to family members
listening carefully to what they are saying
offering emotional support when it is needed
offering practical support when it is needed
signposting them to other support services
111
112
Types of support include:
meals at home
paid carers to help with washing and showering
direct payments for carer agencies or cleaners
benefits and financial support
dementia cafes [24] (read details regarding the reference),[25] (read details regarding the reference)
meeting centres [26] (read details regarding the reference)
day care services
equipment
home adaptations
carer networks
carer and patient drop-in sessions
befriending and sitting services
information about dementia and what to expect [27] (read details regarding the reference)
counselling
technology [28]
113
Since young-onset dementia is rare, and most GPs will see very few people with the condition, it is often mistaken for other illnesses.
It can take much longer to obtain a diagnosis than in an older person.
People with Down syndrome are more likely to develop dementia and at a much earlier age. People with learning disabilities due to other causes also have an increased risk of dementia but not as high as for people with Down syndrome.
People with Down syndrome and dementia have 6 times the risk of dying than those with Down syndrome but without dementia
114
do more men or women get dementia
the majority of people with dementia are women
the majority of people caring for a family member with dementia are women
the majority of care providers are women
115
what type of dementia is more common in minoric ethnicities and why
Vascular dementia is more common amongst ME communities due to higher incident rates of risk factors (high blood pressure, diabetes, cardiovascular disease). In addition, a greater proportion of dementia is young-onset in people from ME communities (6%) compared to white British communities
116
In the UK, about 25 000 people from minority ethnic communities are living with dementia
Young-onset dementia is more common amongst people from minority ethnic communities
117
The World Health Organization [3] (read details regarding the reference) and NICE [4] (read details regarding the reference) emphasise the importance of involving people living with dementia in decisions about their care.
the Mental Capacity Act 2005 [5] (read details regarding the reference) requires us to be sure we have tried lots of different approaches to support people to make their own decisions.
The Equality Act 2010 [9] (read details regarding the reference) makes it illegal for anyone to be treated less favourably because of their age, disability, gender, race, religion or belief and sexual orientation or transgender.
118
what 4 organisations work to promote a rights based approach to care of dementia patients
This rights-based approach to the care of people with dementia is promoted by:
World Health Organization
Alzheimer's Disease International
Alzheimer Europe
Alzheimer's Society
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define LPA and what is it
Lasting powers of attorney (LPA) allow us to nominate a person (our 'attorney') who will make decisions for us when we do not want to or when we lack capacity to do so
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what are the 2 types of LPA
- health and welfare (where you should live, your medical care, what you should eat, who you should have contact with, what kind of social activities you should take part in )
- property and financial affairs (buying and selling property, paying the mortgage, investing money, paying bills, arranging repairs to property)
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what is an advanced decision
verbal or written statement documenting what care a person wishes to refuse in the future. An advance decision must be written down if it deals with life-sustaining treatment
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what 3 things can an advanced decision not request for
It cannot:
ask for specific medical treatment
ask for anything illegal
nominate somebody else to make decisions in the future
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what 5 things need to be included on an advanced decision form
An advance decision should include:
The date.
The person's full details.
A signature of the person writing it.
A statement of the treatments to be refused and when this applies.
A witness signature if it is to refuse life saving treatment.
(must be over 18 with full mental capacity)
(cant be contradictory)
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what is the mental capacity act
designed to protect and empower individuals who may lack the mental capacity to make their own decisions about their care and treatment.
It is a law that applies to individuals aged 16 and over.
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how can you classify one as having mental capacity
To have capacity a person must be able to [12] (read details regarding the reference):
understand the information that is relevant to the decision they want to make
retain the information long enough to be able to make the decision
weigh up the information available to make the decision
communicate their decision by any possible means, including talking, using sign language, or through simple muscle movements such as blinking an eye or squeezing a hand
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what are the 5 key principles of the mental capacity act
- every adult must be assumed to have capacity
- a person must be given all practicable help
- unwise decision doesnt mean they lack mental capacity
- anything done must be in their best interest
- anything done must be restrictive e.g limit their basic rights
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what does DoLs stand for and what is it
deprivation of liberty safeguards
- Deprivation of Liberty Safeguards (DoLS) were introduced into the Mental Capacity Act 2005 through the Mental Health Act 2007 [5] (read details regarding the reference).
The DoLS:
aim to prevent arbitrary decisions that deprive vulnerable people of their liberty
include safeguards to protect service users and, if they do need to be deprived of their liberty, give them representatives, rights of appeal and for the 'deprivation' to be reviewed and monitored
cover people in hospital and care homes registered under the Care Standards Act 2000
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DoLS requirements
Assessments must ensure that:
the person:
is old enough
lacks capacity to make a decision at that time
has not previously refused treatment
the person's attorney/deputy is not refusing/objecting
the person is not currently subject to or should be subject to the Mental Health Act
deprivation of liberty is in the person's best interests
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what does the prime ministers challenge on dementia 2020 aim to do
The Prime Minister's Challenge on Dementia 2020 sets out a vision that by 2020, all people living with dementia and their family carers will receive coordinated, compassionate and person-centred care from diagnosis to end of life.
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according to the prime ministers challenge on dementia 2020,
all people with dementia should be given the opportunity for advance care planning early in the course of living with dementia, including their plans for end of life. This will allow for end-of-life care to be tailored to individuals' different cultural and religious beliefs.
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what does ACP stand for and what does it include
Advance care planning (ACP) [6] (read details regarding the reference):
ensures that the individual's wishes and preferences are known
is consistent with providing person-centred care, in line with the preferences and wishes of an individual
allows for a record of the individual's preferences which can guide care at end of life when the person may have lost capacity and families are faced with difficult decisions
ensures people have enhanced choice and control over decisions about their care
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what 5 things can indicate a person is nearing end of life
- limited speech
- dependant on others
- eating and drink much less
- incontinent
- lack of mobility
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how does the gold standard framework help in identifying end of life patients
The Gold Standards Framework [12] (read details regarding the reference) has provided guidance on knowing when a person is in the actively dying phase. It is important to note that this can last for days or weeks.
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Indicators that a person is entering the dying phase of end of life include:
stopping eating and drinking
loss of consciousness
difficulty swallowing
restlessness
change in breathing pattern
cold hands or feet
fever
sleeping more
decreased urine output
It is important to be able to recognise pain in people who have limited verbal communication. The distress associated with undetected and untreated pain can lead to behaviours which staff and families find difficult. It is important to ask the person if they are in pain and observe their response for an indication of pain.
Facial expressions: Does the person frown, look frightened, grimace, wrinkle his or her brow, keep his or her eyes closed tightly, blink rapidly or show any distorted expression?
Verbalisations or vocalisations: Does the person moan, groan, sigh, grunt, chant, call out, breathe noisily, ask for help or become verbally abusive?
Body movements: Is the person's posture rigid and/or tense? Does he or she fidget, pace or rock back and forth, have limited movement, gait or mobility changes?
Behavioural changes: Does the person refuse food or have an appetite change? Is there any change in sleep/rest periods? Has he or she suddenly stopped common routines or begun to walk about or pace?
Mental status changes: Does the person cry? Has he or she become confused, irritable or distressed?
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what is the purpose of having service evaluations
Service evaluation is an integral part of normal care delivery. It is conducted in order to ensure quality and guide the direction of continuous quality improvement initiatives
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what is the purpose of research
to generate new knowledge about a particular problem
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if your research involves Premises of an NHS organisation, NHS patients, NHS staff, Participants over 16 years who lack capacity to consent, whom must you gain consent/ approval from
NHS Research Ethics Committee
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what is the purpose of the research ethics committee
The REC reviews health and social care research and has a dual mission.
To protect the rights, safety, dignity and well-being of research participants.
To enable and support ethical research that is of potential benefit to participants, science and society.
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what does NIHR involve stand for and what is it
national institute for health research
- NIHR INVOLVE, established in 1996, is a national advisory group that is part of, and funded by, the National Institute for Health Research, the research arm of the NHS. It supports active public involvement in NHS, public health and social research.
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what are the 5 principles involved with NIHR
- sharing power
- including all perspectives and skill
- expecting and valuing contributions of all involved
- building and maintaining relationships
- reciprocity
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Increasingly, service user engagement is moving from management-centred to user-centred involvement.
whats the difference between the 2
management centered = The service user responds to an agenda set by management,
service user entered = service users objectives and priorities are adopted by the organisation
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he NIHR guidelines include the following.
- Aim: the aim of PPI in the study.
- Method: the methods used for PPI.
- Results: what impact PPI had on the study, positive and negative.
- Discussion: how PPI influenced the study overall, positive and negative.
- Reflection: what went well and what could have gone better.
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In which of the following should we involve people living with dementia and their families when conducting our own service evaluation or research?
We want to involve people living with dementia and their families from inception of the work, from concept to dissemination. We also need to ensure that documents and discussions use appropriate language with no jargon.
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what 9 leadership behaviours is essential to support teams to deliver compassionate, person-centred care.
- leading with care
- evaluating performance
- connecting our service
- developing capability
- aspiring shared purpose
- sharing the vision
- influencing for results
- holding to account
- engaging th eteam
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Leaders and senior managers have a responsibility to provide direction, disseminate and promote best practice and to motivate and support staff in meeting their objectives. This requires an understanding of the environment in which the organisation operates and an understanding of current research and developments in dementia care and treatment.
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what does EBP stand for
evidence based practice
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what are 3 overlapping element that need to be considered when making a decision about what is the best course of action for an individual
- best available research evidence
- clinical expertise
- patient belief and preferences
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what is the difference between working in a team and as a team
Working in a team (a group of people who interact with each other) is different to working as a team (a group with a common goal who work collaboratively to achieve it).
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what are the 4 stages to any transformation / making improvements
- Preparing for the transformation.
- Making the transformation happen.
- Gathering evidence about the impact of the transformation.
- Making the transformation stick.
(Throughout this process, evaluation and quality monitoring is required to identify progress with the transformation and the effectiveness of the service improvement.)
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PDSA is a popular model used to approach transformations, what is this?
plan, do, study, act
