Dementia is an umbrella term used to describe a group of disorders that includes a continuous deterioration in cognitive function, which eventually ends in relentless cognitive impairment (Alzheimer’s Society, 2017). Dementia is defined by a gradual decline in areas of function including decline in memory, reasoning, communication and the abilities to carry out the daily activities of living, this view is supported by the Department of Health (2011), adding on to this individual may develop behavioural and psychological symptoms, including depression, psychosis, aggressive behaviour and wandering (Department of Health, 2011).
National Audit Office (2010), state that end stage symptoms of Dementia include physical frailty, eating and swallowing problems, weight loss, incontinence and speech difficulties (National Audit Office, 2010).
In the UK there are approximately 750,000 people suffering from Dementia, this is expected to double to 1.4 million in the next thirty years (NICE, 2016), the costs connected with Dementia in the UK will treble during this same time period to over £50 billion (Department of Health, 2011).
Dementia generally affects older people, however, the younger generation can be affected, the risk of developing dementia does get greater with age, 1 in 14 people over the age of 65 having dementia and over the age of 80 this figure increases to 1 in 6 (Dementia Partners, 2017).
Dementia is caused by gradual changes and damage to the brain, there are a number of different diseases and disorders that can cause Dementia, the most common being Alzheimer’s Disease, The National Institute of Aging (2011) claim in Alzheimer’s disease the loss of brain cells leads to the brain shrinking, bundles of protein known as “Plaques” and “Tangles” gradually form in the brain, these bundles are thought to be responsible for the loss of brain cells leading to a decline in a person’s mental and physical abilities, including poor memory for short-term events, loss of concentration and decision making, disorientation and loss of ability to carry out daily activities of living which can include washing and dressing, mealtimes and lack of social inhibitions.
Vascular Dementia is caused when the brain’s blood supply is obstructed, this can normally be as a result of a stroke or a series of multi-infarct Dementia. (Erkinjuntti, 2012); claims Vascular Dementia is caused by a decreased blood flow to the brain which damages and eventually kills the brain cells, this view is supported in the work of Timo (2012).
The writer can reflect on this in their own practice, reflective practice comes from the work of Dewey and Schon, Dewey (1980) suggests to be reflective you will think why things are as they are, Schon (1983) thought reflection had two parts ‘In action’ for example reflecting as you work and ‘on action’ e.g. after interaction, many of the residents the writer cares for suffer from Vascular Dementia, Vascular dementia tends to be variable where their cognitive function will tend to be lucid to not, one female resident I care for has lucid moments where she has an awareness of her condition, knowing she suffers from Dementia and often claims it ‘is in the family’ however, the next hour she is having an episode of acute confusion, Vascular dementia presents like a step-like pattern of deterioration, this awareness of the condition can often result in a higher risk of depression (Alzheimer’s Society, 2017).
Dementia can also be caused by Dementia with Lewy bodies, small circular lumps of proteins that grow inside brain cells. Howard (2007), stated that it is not clear how they damage the brain but they seem to have an effect on the brain’s normal functioning.
This type of Dementia is closely related to Parkinson’s disease, the person will often display Parkinsonism symptoms for example tremors, unsteady gait and the slowing of movements. I can relate this to one resident in practice, Lewy bodies Dementia appears to exhibit as a severe type of dementia with visual hallucinations being a major symptom, seeing things that are not there in their rooms and talking to them.
Pick’s disease and frontotemporal Dementia is a cause of dementia, this is caused by damage and shrinking in two areas of the brain, the temporal lobe, and the frontal lobe, this can often develop in the under 65’s and is sometimes hereditary, it is estimated 20% of cases have inherited a genetic mutation from their parents (NHS, 2013)
Other types of causes of Dementia include Mixed Dementia, this is Alzheimer’s and Vascular Dementia occurring together, Motor Neurone Disease which can be related with Fronto-Temporal Dementia, a rare condition that damages the nervous system over time.
Huntington’s Disease is a rare genetic condition that causes gradual brain damage, Aids and Creutzfeldt-Jakob Disease (CJD).
In addition, Dementia or type like symptoms can be caused by the following conditions:
These can be treated or prevented from progressing.
Dementia affects each person differently, the personality, life history, circumstances and physical health will have an influence on the individual, it is most important to get to know the person as an individual and not a cause, this can be associated with person-centred care. (Manley k et al, 2011) defines this as treating people as individuals and allowing them to make choices about their care.
Symptoms of Dementia are often not an absolute cause of the brain damage but have social, environmental or physical causes (NHS, 2013), for example, if a person is treated disrespectfully they might become angry or withdrawn, this can be during personal care if the care staff take over the care and do not give the resident time, symptoms of dementia might be shown in aggressive behaviour and verbal responses, if the person is in an unfamiliar environment with a confusing layout to them, the person may become more disorientated and display wandering, this is often the case when a resident is transferred to hospital or we have a respite resident who comes to us for a short period from their own home to give their carer a break.
If a resident is in pain they cannot always communicate this and dementia symptoms will be exacerbated, at my care home if a resident appears more confused, we rule out a physical cause first such as infection, we also use an Abbey pain score tool, this is a measurement of pain for those who cannot communicate (Abbey et al, 2002).
There are some difficulties that people suffering from dementia might experience, this can include problems remembering recent events, conversations, names and faces, residents who are visited by their families can often mistake their grandchildren for their own children as they are in that time, this is a perceptual problem which is a problem recognising faces or objects. Frequent and progressive memory loss is also an impairment of dementia, people with dementia begin to forget more and the most recent events seem to be forgotten more quickly, occasionally though memories are triggered by familiar faces, smells, touches, songs or rituals.
They may suffer disorientation in time and place, night staff used to comment how a female resident used to walk around all night asking for the keys and wanting to lock the doors, when we asked the family they commented how the resident used to be night security manager at a factory and she used to go around checking and locking all the doors.
Dementia sufferers can display shorter attention span especially at mealtimes, not wanting to sit down and becoming easily distracted, this can result in weight loss, working with the GP and the family can have a beneficial effect, finding ways that the person will enjoy their meals including serving their main meal later in the day or finger foods so they can come back to them, build up drinks or snacks placed through the home.
Incontinence or problems finding the toilets due to not recognising this area, many residents may urinate in the communal area due to being unable to express what they need.
Changes in communication levels is common, this can present a difficulty in understanding what is being explained to them or difficulty in finding the right words, these can often become jumbled and make no sense to others, if a person has an awareness of their condition this can lead to mood swings or anxiety and social withdrawal, residents can become frustrated and agitated with staff (Pearce et al, 2002).
Dementia sufferers often have problems in completing everyday tasks, for instance, problems in carrying out activities in the correct sequence, they may not know what order clothes are worn or wearing layers of clothes.
The brain is a very complex organ and is made up of around 100 billion cells called Neurons, the collection of these neurons in the brain is divided into two halves, (hemispheres). The right side of the brain is responsible for putting information together, if you see a person the information goes from your eyes to the right side of the brain, piecing the information together so you can say ‘I see a person’. The left side of the brain examines this information which is collected on the right side of the brain, allowing you to broaden further in what you see, so you can say this person is my mother (RICE, 2017).
People with dementia who have damage to the neurons on the right side of the brain will have difficulty piecing information together, they will be able to see people, objects but not be able to piece together who or what they are. People who have damage to the neurons on the left side of the brain appear to suffer from depression, having more organisational and language problems (NHS, 2013).
A major part of information processing is in its description of memory, there are three stages of our memory that work together, the first stage involves all our senses working together picking up on aspects of our environment including our sight and smell, if every time we visited our grandmother she was cooking cakes, this sensory memory would be stored, when we smell cake we would remember this memory.
Secondly, is a short-term memory which is the first stage for approaching information like phone numbers or plans for the week. The next stage is the long-term memory, the information we collect becomes embedded in our minds, there is no limit to the amount and types of information we can retain.
Retaining information, however, does not just happen, we have to collect the information around us and then absorb it into the levels of our memory, to do this we have to use selective attention, meaning blocking out distractions and concentrating on one thing, avoiding loud noises or background sounds, people suffering from Dementia often struggle with their concentration levels, becoming easily distracted.
In Alzheimer’s disease, the hippocampus is damaged (the centre of emotion and memory), this makes it hard for a person to form new memories or learn new information, a person with Alzheimer’s disease may not recollect what they did earlier that day or what they said, meaning they may often repeat themselves. As Alzheimer’s disease damage spreads throughout the brain, further areas and lobes of the brain are affected, the cortex can become thinner, so memories from the past are lost and the brain gradually shrinks. Damage to the left hemisphere is connected to problems with the semantic memory and language, so someone may find difficulty in saying the right words.
Damage to the visual system in the Temporal lobes make recognising people and objects harder, often not recognising families, because the pathways of vision and hearing are separate, hearing is often not affected, so once a person with dementia hears a familiar voice they recognise them.
As the damage travels to the frontal lobe problems with decision making or planning become more frequent, or following tasks in sequence such as a recipe or dressing.
In comparison to the losses, many abilities are kept, learned memories such as playing the piano depend on procedural memories and are mostly stored deep in the brain, it’s these memories in Alzheimer’s disease that are retained the longest.
A sudden state of confusion does not always demonstrate Dementia, more often there is an underlying cause which can include urinary tract infection or other infections like Pneumonia, infections like these can cause sudden, severe confusion, if a resident appears more confused than normal or displaying other symptoms like falls, testing for a urinary tract infection should be implemented.
Many medications can cause side effects, one of these side effects can be an effect on a person’s memory or cognitive functions (Alzheimer’s Society, 2017). Medications are so helpful in treating many ailments but they are not without their adverse effects, when these effects interfere with attention, memory, language or cognitive function Dementia may be suspected, however, many medications are linked with cognitive side effects including antidepressants, sleeping pills, mental health medication, steroids and some pain relief medication including opioids (Alzheimer’s Society, 2017).
These cognitive side effects are reversible and if the medication is needed for a certain illness, working with the GP and MDT to find the right treatment.
Depression, stress, and anxiety can affect mood, memory, reasoning and behaviour particularly in the elderly, when someone is depressed parts of the brain that are important for memory, thinking, mood, sleep, and appetite are compromised (ageUK, 2016).
Diseases like Thyroid disease can copy dementia symptoms, a person may feel slow, tired, depressed and forgetful, the thyroid secretes hormones that keeps every system in the body functioning at an optimal level, too little thyroid or too much hormone can mimic dementia type symptoms.
Vitamin deficiencies like B12, this vitamin is important for the development of red and white blood cells, if not enough B12 is absorbed this can result in confusion, personality changes, irritability, depression, and forgetfulness.
Diabetes can damage blood vessels in the brain, this will destroy energy needed to make new neurons, concluding in memory problems.
Alcohol abuse eradicates brain cells in important areas for memory, thinking, decision making and balance, as well as destroying brain cells, heavy drinking causes an unhealthy diet that strips the brain of nutrients needed such as the B vitamins (Thiamine B-1), severe thiamine deficiency may lead to Wernicke-Korsakoff syndrome, a chronic memory disorder that creates confusion, memory loss, hostility, and agitation (Konishi, 2009).
Other problems can include Pain that causes agitation in people, dehydration and poor diet, constipation, visual problems and environmental and social changes such as change of staffing in a care home or moving home. Any of these changes can also bring on the sudden confusion of a person who has Dementia, if there is any possibility that the sudden or increase of confusion has a physical cause, the person must receive immediate medical attention.
Each person may experience Dementia in a different way, nobody’s journey is the same and there is no time period in which the condition will progress, it is not fully known why somebody with dementia will have fluctuation of abilities but part of this could be how the person is feeling that day, we all have good and bad days, how much sleep they had, a person with dementia cannot always grasp night and day, this leads to the person becoming fatigued during the day, this tiredness can have an effect on cognitive abilities, socialising, and coordination and balance (Alzheimer’s Society, 2017).
A part of good dementia care is continuity and the importance of continuity in staff is paramount, the dementia resident must become familiar with their care staff to gain trust and become familiar with routines such as medication and personal care. High staff turnover, lack of training, poor risk management, and care planning all have a detrimental effect on any care if all care staff is working differently causing the resident to become more confused this can lead to frustration causing a fluctuation in behaviour.
As a resident dependency levels increase this can lead also to a fluctuation in behaviour as they may be frustrated they need extra help now or that the staff is taking away their independence, good person-centred training for all staff can have a positive impact on this (McCormack, 2004). This can be linked to stress which has an impact on our fluctuating abilities, in the early stages of Dementia the person may be aware of their diagnosis. Bertrand (2006) claim it is important to not overburden the person as this will increase stress levels and therefore their symptoms.
As discussed previously, infections, illness and constipation all can have an effect on a person’s dementia, this can be highlighted in increased confusion, higher incidences of falls and aggressive behaviours’, also medications that can have adverse side effects will have a fluctuating effect on what the resident is capable of at that time.
An early diagnosis will help a person with Dementia and their families to receive help sooner so they can come to a better understanding of the condition, this will help with an adjustment to the diagnosis and to be able to make appropriate plans for the future, this can include, legal, financial arrangements as well as plans for living arrangements if and when the need will arise, they can research into services that will reinforce the quality of life for the person with dementia and their families. Services can include Alzheimer’s society, Dementia UK, Age UK, local dementia cafes, and groups (Alzheimer’s Society, 2017).
Early diagnosis will allow the person with dementia to play an active role in plans for the future, whilst families can learn about the disease and how to plan for the future also
As the condition progresses this can be very worrying for the person and their families, the sooner the diagnosis of dementia is determined, the sooner treatment can begin, many medications used in the treatment of dementia such as Donepezil (Aricept), research has said if used earlier in the course of treatment has said to be more beneficial to the individual (NICE, 2016); medications like Donepezil can help to retain daily activities of living, a quality of life and steady cognitive functions, these medications, however, are not a cure. Early diagnosis will allow access to these medications and to other services including dementia specialist nurses, memory clinics, psychiatrists, dietitians, speech and language therapists or social services. Access to social services will allow them to find out what support they are entitled to when needed
The earlier the diagnosis, the quicker the person diagnosed can start to plan and regain control of their life again, the impact on the family can differ some may find it a relief as it has given them a name to the symptoms that their loved one has been displaying, whilst others may not acknowledge the diagnosis, not wanting to believe it is a member of their family, fearful of how their loved one will cope and what they will become. The person diagnosed may feel fearful and have many concerns that they will lose control over their lives and that they have no future, they will experience many feelings from grief, anger, denial to hopeful acceptance, this can be associated with the five stages of grief the Kubler-Ross model
The person diagnosed will worry about the future that they may become a burden to their family or that they will have to move into long-term care, the main point is for the person diagnosed and the families to learn to support and communicate together, offering the person comfort when needed and the freedom as much as possible to be able to take control of their own lives.
NICE guidelines (2011); state that in the wake of a diagnosis of dementia, health care professionals should present written information regarding:
The health and emotional well-being of a person with dementia should be observed on a regular basis to make sure any problems can be actioned promptly, when reporting problems it is important to follow the organisations policies and procedures, at my care home we have an electronic care planning system where all information is inputted, we follow a person centred care planning approach where every information inputted is about the person and their feelings and wishes, the family are involved at all times in the person’s care, they will be invited to reviews of care plans, yearly reviews and update on DR’s visits, falls or illness.
When a diagnosis of dementia is believed it is important to record all occurrences, however, small you believe so early treatment can be started, these occurrences, however, small will allow the healthcare professionals to build a picture of the person’s mental and physical state, recording times that a person forgets no matter how small or when they became confused or disorientated will allow healthcare professionals to reflect and identify regularities to determine if indeed the memory is deteriorating.
It is vital to keep the family involved in all aspects of care, the family knew their relative before diagnosis, we as care workers unfortunately often see the illness and not the person, the family will know the persons likes and dislikes and past routines that will enable care staff to make looking after that person with dementia a more positive situation for all involved. At my care home we give relatives a pamphlet called ‘This is me’ that they fill in when the person with dementia moves into our home designed by the Alzheimer s Society, which provides information about that person including what they like to be called, their life so far, routines they like, events that may upset them etc., this allows the people who care for those individuals to build a better picture of who the person really is, this is then relayed to the computer system for all staff to see (Management, care staff, housekeeping)
Healthcare professionals may benefit from information that we record in our electronic care planning system, it is important we closely observe areas including memory, behaviour and personality changes, on the system used at my care home we have a section called feelings that we can comment if the resident has become verbally or physically upset towards staff or fellow residents.
We comment on all aspects of daily living, personal care, continence care, food, and fluid intake so we can troubleshoot any areas, for example, how often are they having their bowels open and what type, are they drinking enough and diet intake.
Activities, if they participated and did they enjoy if not what are they enjoying, during the day hourly checks are made on each resident for their whereabouts and enhancement of their well-being. The senior staff comment on medication and if they refused so we can follow a pattern, if pain relief was needed from the homely remedies stock, this can be given for three days before GP is contacted.
A guideline has been constructed in helping people with dementia, this involves the early diagnosis of dementia, inside this guide, it states that all primary healthcare professionals should refer anyone suffering from mild cognitive impairment for assessment (NICE, 2016). Studies have proven that 50% of people displaying symptoms of mild cognitive impairment go on to develop dementia at a later stage (ageUK, 2016). Also included in NICE guidelines are instructions regarding diagnosis and assessment.
NICE (2011) state that diagnosis can only be made after assessment that must include:
As care staff our guidance is with a person’s history, the information we provide and report can ensure that the person is receiving the proper treatments and care. Any concerns should be reported to senior and management staff so we can make the appropriate course of action and the right professionals notified, verbal concerns should be factual and no opinions given as opinions can be used inappropriately, this can then be put in a written report which once again should be factual.
We have many observations that we can monitor whether this is continence charts for three days so we are ensuring the resident is receiving the right products to weights which are either done weekly or monthly, on our electronic system once the numerical value is inputted, this plots onto a graph, this gives us a visual portrayal of our findings, which can lead to a better explanation of any changes that are taking place.
The person-centred care can defines as treating people as individuals and allowing them to make choices about their care (Manley k et al, 2011). To attain this, it involves encouraging, listening and supporting people to consider their needs and beliefs. Person-centred care is an important approach towards people suffering from dementia and the care they receive, it was developed by Tom Kitwood in the late 1980’s at the University of Bradford challenging institutional approaches and redirecting attention away from bio-medical aspects of dementia (Tom Kitwood and Kathleen Bredin, 1992). This allows people with dementia to be seen as able to make sense of the situation they face, Kitwood called this ‘Personhood’.
Kitwood defines ‘Personhood’ as ‘a standing or a status that is bestowed on one human being by another in the context of relationship and social being (Tom Kitwood and Kathleen Bredin, 1992).
At my home we follow the person-centred approach as all good care homes should, care plans are written with the residents as much as possible and the families, each care plan is extremely person-centred and includes all information needed, to give an example of a care plan I wrote for personal care it will include what time they like to get up, how and when they like a wash, shower or bath, even down to what toiletries are their preferences and the colour of their flannel.
Residents with dementia are seen as individuals rather than an illness or on the capabilities they have lost, person-centred care follows a holistic view taking into account each person’s features, abilities, interests, choices, and needs. Person-centred care also means treating people with dignity and respect. Dignity has become a key concern across the UK health services following the publication of the Francis Report (2013); this report highlighted appalling anguish of many patients across one NHS Trust.
The Royal College of Nursing (2009) defined dignity as ‘Dignity is concerned with how people feel, think and behave in regards to the worth or value of themselves and others’, this view can also be supported Matti et al (2007) who stated dignity as ‘treating people in your care like a ‘somebody’.
The dignity challenge was set up in 2009 by the Social Care Institute and National Dignity Council, this was set up with the view to put dignity and respect at the front of all care services, promoting values that services that care for people should be demonstrating, this was in reaction to adverse media reports regarding how people were being treated across health and social care services throughout the UK, the Social Care Institute found that if people were not being treated with dignity or respect, patients would feel not in control of their care, this would not be promoting person-centred care (scie, 2013).
No two people with dementia follow the same path, which means their care should not be the same either, Cantley (2002) have claimed that studies have shown that adopting a person-centred approach can reduce incidences of aggressive behaviour’s in dementia and also ensure that the person does not have to tolerate demeaning, discriminatory and abusive practices that can take place. People and families should feel in control, safe and involved in all aspects of their care, all care plans should be written with the person and family involved.
Non-person centred care is about care that meets the needs of the institution more than the needs of the people being cared for, it is about being task orientated to meet carers schedules and routines care, for example, mealtimes being served for everybody at the same time regardless if they were hungry or not or everyone has to be got up at same time ready for breakfast. This follows a Biomedical approach to dementia which places an importance on diagnosis and treatment for the individual, it follows symptoms and behaviours’ and looks to diminish these through intervening with medical treatment, through the biomedical approach dementia is seen as a continuous condition with little hope for the future. In the biomedical perspective, the person is viewed as a disease and not an individual (Brooker, 2006).
For many years there have been concerns about institutional care and dementia, this is called institutional perspective of dementia care. Bowie (1996) states this as established activities that are brought together in a single rational plan so they can fulfil the aims of the institution examples of this could be rigid routines, set mealtimes, everyone gets up at the same time, giving the residents no flexibility in choice and no promotion of person-centred care.
Person-centred idea intends to view the person with dementia as an individual rather than an illness compared to the non-person-centred approach which focuses on the illness of dementia and lost abilities, in the non-person centred approach the person is treated as a collection of symptoms and behaviours’ to be contained. Person-centred care acknowledges the whole person, focusing on the person’s different qualities, abilities, interests, desires, and needs. Person-centred care also focuses on treating all with respect and dignity, several studies have demonstrated positive results from the implementation of person-centred care. Research found that a person-centred approach which included maintaining social activities, past pleasures, and activities, was linked with positive quality of life outcomes with those with Alzheimer’s disease (Sandy C Burgener et al, 1999).
McCormack (2004) proposes that relationships, environmental conditions, and individual values enhance person-centred care.
When supporting the fluctuating needs and abilities of the person with dementia as a care worker you must focus on the skills and abilities that a person has rather than those that they have lost, making sure that you are aware of a person’s background, life history and likes and dislikes, all care staff should be aware that a person’s needs will fluctuate on a regular basis and that staff should adopt a flexible approach.
A psychological approach will consider a person’s life history and how this impacts on a person’s experience with dementia, when a psychosocial approach (relationship between a personal environment and wider social world) is considered as care staff we begin to reflect on how our behaviours and interactions towards those with dementia impact on their symptoms, behaviour, and experience.
The psychological approach will use techniques such as reminiscence, at my care home we have excellent activity staff who undertake regular reminiscence activities, memory games ‘Do you remember when?’. We have a reminiscence room with a piano that many residents can play and old fashioned items that they recognise.
Validation therapy which was developed by Naomi Feil for older people with dementia and cognitive impairments, is a holistic therapy focusing on empathy and a means of communication for those with dementia, this therapy promotes that it is positive for us to enter a dementia person’s reality rather than bring them back to ours, some people say this is lying to them, for example, we have a female resident who believes she is always waiting for her husband to come home in his truck in South Africa, in the validation therapy we do not challenge this which promotes the person’s dignity and self-esteem.
In my home, we use music therapy, which is a good way of communicating with dementia residents, a certain piece of music or song can unlock memories and feelings still stored and many of our residents love to dance along.
Tom Kitwood, as mentioned previously, suggested a holistic approach to dementia by looking at a person’s life history and experiences, their personality and physical health will all play a major role in helping those with dementia to live as independently as possible (Kitwood.1997), by knowing the person you can provide care around the person, I mentioned previously about the female resident who would wander at night trying to lock the doors, once we had discovered she was a night security manager we could provide more person-centred care and support her during these moments.
A person’s physical condition could also be limited by the condition of dementia for example mobility, care plans should be kept updated monthly or when changes happen and ensure practices are put in place and reflected in the care plans, this could be sensor mats by bedsides so staff can be alerted when a resident is getting out of bed, these are very useful when they are high risk of falls, this should be updated as a risk assessment as well and always keeping the family informed.
The environment is very important in providing a good quality of life for those with dementia a few simple changes to the environment can play a beneficial role in this, these can include:
Colour, which plays an important role in helping in recognition, using the same colours for the toilet will help to avoid distressing incidences, also placing a sign labelling the toilet, picture of the toilet as well at eye level will also contribute.
Try not to make bedrooms cluttered this will help in reducing the risks of falls and allow easy movements.
Noisy environments can be distracting and distressing for those with dementia, try to minimise background noises from the television and radio and do not have them playing at the same time (Annie Pollock and Liz Fuggle, 2013).
To also meet fluctuating needs, have regular, consistent staff who know the resident and can provide, good continuity of care, we know our residents, we can see when they’re in pain, ill or upset by many signs even if they cannot communicate verbally to us
People with dementia will walk or wander around, ensure there are hand rails around the building to minimise risk of falls and make the resident feel safe when walking around, for those who look restless as many do enjoy the walking around, think why they are so restless, could they be looking for the toilet and cannot remember what it looks like or are they bored, providing activities and distraction can be a benefit.
Incontinence can become a problem in dementia, ensure the resident has access to the toilets and assessed for the correct continence products to lessen embarrassment and frustration for the individual involved. Document all products to be used in care plans, each of our residents also has a letter in their wardrobe pinned up to say what products should be used.
If a resident is repeating themselves this can cause frustration for all involved, it is often useful to write notes for the individual that they can keep on them so they can read when they become anxious, always stay calm and encourage the person to keep calm also, always let them know you are there to help them.
Society has created many myths and stereotypes about dementia, this condition is often seen as people being cared for 24 hours a day in a locked environment so they cannot get out and wander. People with dementia are all aggressive and have no comprehension of anything around them. People with dementia are all helpless and lose their rights once they are diagnosed with the condition, this can create a feeling for those diagnosed of fear, they may isolate themselves socially as they feel a burden to those around them and they may feel a loss of independence that they cannot participate in activities like they used to before diagnosis. Sometimes it is the person diagnosed who has their own stereotypes of dementia, it is only through acceptance and education that this can be resolved so the person diagnosed can learn to live with the condition.
People’s incorrect views of dementia often come from ignorance, for many the only experience they have on dementia is from television, films and the media which often just show the horror stories as this is what sells stories. If this is the only idea of dementia that people have, then there is no wonder that these stereotypes exist.
The person diagnosed and their family should be supported to develop an acceptance and understanding of the condition of dementia that they are all facing, this can come from the GP, health centres, libraries, societies, and clubs, there are many local drop in Alzheimer’s cafes that have been set up these are a post diagnostic group intervention that provide education, information and support for those with dementia and their carer. It is an opportunity to socialise and meet others facing the same diagnosis (Alzheimer’s Society, 2017).
The internet, the Alzheimer’s society, Dementia UK, or NHS Direct are all useful sources of information, some of the information that will be present is not always pleasant reading but will help them to prepare for the future and will not be a shock to them if or when any of the advanced stage symptoms occur.
To allay fears in the future, advanced planning should be supported this can be in the form of making arrangements financially and practically, the person with dementia can make their own choices about future care so that they feel more in control of their future, whether this be live at home and have carers as the person may not want to be a burden to their family or move into residential care as the disease advances, by looking at care homes together all the family will feel involved and this will allay fears about future choices. Respite care is often beneficial for the person diagnosed and the family as it gives the carers a break and the person diagnosed will see if this sort of environment is for them.
If a person lives alone and has a care package this can be a worrying time for the family but can be made easier by working with the care company and by making adjustments to the person’s home to make it safer, this can be grab rails around the home, a personal alarm that goes through to a care call centre, notes, lists or memory joggers around the home, making these changes may help the family whilst the person lives independently to reduce any worries regarding the person’s safety.
Dealing with a diagnosis of dementia is not easy, to reduce fears counselling could be an option for the family and carers involved, this can be provided via the GP and is completely confidential, counselling can help the family to talk and accept their fears, feelings and thoughts for the future.
In my care home as described before we use person-centred care planning, this we hope allays fears for the family that they know their loved one is being treated as an individual and not a diagnosis of dementia, we offer families a guest speaker who comes in to talk to them about dementia in an informal way, the families have said that this is a great help and they get to talk to other families going through the same ordeals. We hope to make the journey of dementia smoother and as safe as possible for all that come to live in our home.
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