Study of Care for Early onset Dementia Sufferer

In this case study I will be outlining the nursing care I would provide for 69 year old Simone who has been diagnosed with early onset dementia and wishes to remain living at home with her 40 year old paraplegic daughter whom she cares for. As I have only a few brief details about Simone’s current condition, I will be hypothesising and considering various outcomes based on possibilities in her life. I will discuss the diagnosis of different types of dementia and their/its possible effect on Simone then a possible care package based on evidence from literature.

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Dementia is the name given to a condition which is a gradual, progressive decline in a person’s memory and other cognitive abilities which eventually affects their function and ability to care for themselves (Alzheimer’s Scotland 2010.) Despite huge advances over the last century, the diagnoses of dementia and its sub-types remains a challenge (Gold 2002.) The most common form of dementia is Alzheimer’s Disease (AD) which affects 55% of people with dementia in Scotland. This disease slowly destroys the brain cells and connections affecting a person’s cognition and function (Alzheimer’s Scotland 2010.)

The functional assessment staging (FAST) tool provides a detailed framework for the expected evolution of AD. It works by outlining the stages of AD that the person should go through and by assessing them regularly against these stages, the assessor can decide if they have AD or not. For example, Simone seems to be at stage “4: Mild Dementia: IALDs become affected, such as bill paying, cooking, cleaning ansd travelling.” If she has AD the next stage would be “5: Moderate Dementia: Needs help selecting proper attire” but if she was assessed instead to be at “6a: Moderately Sever Dementia: Needs help putting on clothes” then she would have missed a stage in the progression of AD. She would either not have AD or have another type of dementia as well (Medical Care Corporation 2010.) Thus any deviations from this tool can give the assessor a clue to another process (Gold 2002.)

If this was the case then there is a strong possibility that vascular dementia (VD) would be diagnosed. This type of dementia accounts for around 20% of sufferers in Scotland and a further 20% have VD and AD known as mixed dementia (MD.) The most common sub-type of VD is multi-infarct dementia (MID) when the brain has been damaged by small strokes but it can also be causes can be attributed such as irregular heart rhythms and high blood pressure. The effect on the person is very similar to AD but the progression is different. While the decline in AD is gradual as per the stages in the FAST tool, the condition of the person with VD will be generally be step-wise and sudden caused by a series of strokes. This could cause the condition of the person to deteriorate quickly missing out one or more of the FAST stages (Alzheimer’s Scotland 2010b.)

There is evidence that the FAST tool is superior to the Mini Mental State Examination (MMSE) in measuring the evolution of AD (Gold 2002.) The MMSE is the standard tool used to screen for cognitive impairment and is recommended by the National Institute for Health and Clinical Excellence (NICE 2007) for deciding whether drug treatment should be used for the person with dementia. It rates the person’s cognition from 0 to 30 based on functions such as memory, arithmetic and orientation. NICE (2007) advises that dementia medication, such as donepezil, galantamine or rivastigmine, should only be used in moderate to moderately severe cases of AD, i.e. a score of between 10 and 20 and that memantine can be prescribed for moderately severe to severe AD. 64 carers of people with dementia responded in a questionnaire saying that they believed that early prescription of medication was necessary to see any benefit in the person with dementia. Also that these benefits should be discernible for at least six months or it was not worth taking the medication (NICE 2007.)

And so Simone would most likely be prescribed a medication. However, dementia is not the only cause of the signs that Simone presents with. Diagnosing dementia is extremely difficult and is partly carried out by eliminating other more treatable causes such as confusion and depression (Nazarko 2009.) Although Nazarko uses the word “eliminate” and Simone has been diagnosed with dementia, it is possible that she is also suffering from depression. The prevalence of depression is increased to 10-20% in people with dementia (Ouldred & Bryant 2008) and considering that Simone’s daughter has suffered from two bouts of depression in recent years, this is a consideration.

After diagnosis, the CMHN must decide on how to ensure that a care package is put in place. The traditional biomedical approach to disease with its focus on the pathology and emphasis on cure has often created an attitude of hopelessness for chronic conditions such as dementia. This has led to carers making people physically comfortable as their condition deteriorates instead of an attempt to improve the person’s quality of life holistically. However, this has been changing over recent years, with more interventions to enable sufferers to live as full a life as possible (Woodrow 1998.)

Primary prevention, to avoid early pathological changes and secondary prevention, to delay pathological processes that lead to a worsening in the client’s condition, are strategies that NICE (2007) states are worthwhile pursuing. The earlier the diagnosis is made, the more effective secondary interventions can be. In Simone’s case, her earlier diagnosis will mean that supports and resources can be put in place and will have a better chance of working effectively.

The first thing that the nurse must achieve is the building of a therapeutic relationship with Simone, something that Egan (2009) calls the empathic relationship. The nurse must listen to the client, understand them and their concerns, and respond to them in a constructive way (Egan 2009.) Once the assessment is complete and a diagnosis has been made, dialogue between nurse and client may start to diminish and be contained within the context of the initial appraisal of the client’s condition. This can lead to discussions only around symptoms, their severity and frequency and their management. This leaves the client, who is struggling to make sense of their condition in the context of their whole life, without the necessary support from the nurse to do so (Eckhart 2007.) And so the nurse must maintain a holistic and person-centred approach which is formed around listening.

The nurse must try to empathise or “tune in” to the client physically and psychologically, being aware of body language, listening actively and understanding their concerns contextually. As Egan (2009) says “listening is at the very heart of understanding.”

During the process of establishing this relationship with the client, the CMHN must also consider other disciplines that could have constructive input into the client’s care. In providing a service to person with dementia, collaboration with other mental health services, social services, family doctors and other support services is important. Recommendations by Cosgrove and Williams (2005) state that for half a million people with dementia in the UK a specialist multi-disciplinary team is justified, and that for a smaller population those who decide on service provision should prioritise the disciplines which would work most effectively. For example, when the diagnosis has been made and initial assessment done, Simone’s case would be discussed at a MDT including Simone, her daughter, an occupational therapist (OT,) a psychiatrist, the CMHN, social worker and other professionals that could have input. This would generally start with the CMHN who would have a central role being Simone’s first point of contact with the MDT (Cosgrove & Williams 2005.)

The Department of Health (2005) published the Ten Essential Shared Capabilities; A Framework for the whole of the Mental Health Workforce. These are values and principles that were issued so that every mental health worker would abide by them. The first is Working in partnership that advises mental health workers to “develop and maintain constructive working relationships with service users, carers, families, colleagues, lay people and wider community networks” (Department of Health 2004.) Hall et al (2008) says that no one agency, profession or individual can provide the diversity required to successfully and efficiently provide a comprehensive care package for a service user. They go on to say that each discipline must overcome any barriers that may interfere with the goal of providing person-centred care planning (Hall et all 2008.)

Simone has spent the last ten years being the sole carer for her daughter who despite being described as very able will have put some strain on her independence. Kitwood (1997 cited in Woodrow 1998) has said that the stresses of life can contribute to the development of dementia which may have contributed to the development of Simone’s condition. Also, the anxiety she is feeling over her diagnosis will add to this stress as she worries about her ability to care for her daughter.

We also know that Simone has lost contact with many friends since starting to care for her daughter ten years ago and does not have any family locally that can support her. And so the stress of caring will be more pronounced without help and support. This absence of an emotional support network will also have contributed to Simone’s isolation. Previous studies have shown a correlation between social isolation, or having fewer interactions with others, and dementia and cognitive decline (Wilson et al 2007.) Thus we can deduce that reducing the strain of Simone caring for her daughter is likely to slow any deterioration in her condition. The CMHN can liaise with an agency such as Alzheimer’s Scotland to organise support for Simone and her daughter to help assist in this.

Information at this stage is very important. Simone must understand her condition, ways to keep herself safe and strategies for keeping herself healthy in order to delay the degenerative process of dementia.

Reduced appetite and food intake is closely associated with the ageing process. Studies have shown that the transition of food through the digestive system of an older person is significantly slowed causing a feeling of fullness that can lead to reduced appetite. A diminished sense of taste and smell occurs in the ageing process; in particular, alterations in these senses occur in AD and can affect a person’s food intake (Shepherd 2010.) This will lead to weight loss which is common in older people, and in particular, people with dementia, even more so for those in the later stages of the disease. Those with dementia will often lose additional weight due to a lack cognitive functioning regarding preparation and consumption of food such as use of cutlery, lack of co-ordination, difficulty in preparing food, loss of interest in eating and forgetting to eat. Under-nutrition increases the risk of a variety of physical health problems and will lead to a decline in functional and cognitive capabilities (Stanner 2007.) There is also the possibility of over-eating during the early stages of dementia due to memory problems. This does not rule out the possibility of malnutrition as the food consumed may not contain the balance of nutrients required to remain healthy (ADEAR 2010.)

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Routine nutritional screening for malnutrition in high risk groups such as those with dementia should be a priority (Stratton & Elia 2007.) The standard screening tool used in Scotland is the Malnutrition Universal Screening Tool (MUST) is a simple five step tool that can be used for the screening and management of a client’s nutrition (Malnutrition Advisory Group 2008.) This should be administered to Simone initially and at every meeting thereafter to identify early signs if there is a decline in her nutrition.

She should also be asked about what food she eats and its nutritional value carefully considered. There is research to suggest that the biological processes involved in ageing may be due to damage to cells and could be caused by the generation of “free radicals.” Polyphenols are anti-oxidants known to tackle these free radicals and can be found naturally in tea, fruit and vegetables, some herbs and wine. Studies have shown that these polyphenols may also assist in the prevention of dementia which is thought to be caused partly by oxidative stress (Shepherd 2010.) There is also evidence to suggest that increasing omega-3 fatty acids and oily fish lessens the chances and possibly progression of dementia (Shepherd 2010.) Levels of these nutrients have also been found to be inversely related to the depression of severity. Concentrations of folate are also thought to be similarly related to depression (Williamson 2009.)

There is a wealth of further information on diet and it’s effect on dementia. Simone could benefit from a digestible form of this information from a source such as Alzheimer’s Scotland (www.alzscot.org) which can provide information in booklet form that is simple and accessible. The nurse should support Simone to go through this information, ideally with her daughter as well, so that they can plan a good nutritious diet that can be reinforced by them both.

Simone and her daughter both being involved in the preparation of food will also reduce the risks to their safety. Simone has already shown difficulty in cooking safely and this may cause her to stop this activity, impacting on her diet and nutrition. People with dementia may avoid doing an activity altogether, refusing to acknowledge the impact of the disease on their function (Howorth & Saper (2003.) This is something I will discuss later but for now I will concentrate on the risk that Simone’s condition presents and her insight into it.

Mitchell & Glendinning (2007) state that older people manage everyday risks in order to lead as “normal” a life as possible. In Simone’s case, she wishes to remain in her own home with her daughter and states that she does not need any help in coping there. However, she has yet to assess the risks with regard to her and her daughter’s long-term well-being with regards to her recent diagnosis. This may be due to a lack of insight into her condition at this early stage. As show by Howorth & Saper (2003) in their research into insight in dementia sufferers, the discrepancy between what patients report and carers report on an ADL (activities of daily living) scale seems to indicate a loss of awareness regarding cognitive and functional abilities for those in the early stages of dementia. They go on to suggest that this may highlight a distinction between implicit and explicit knowledge in the dementia sufferer, reflected in Simone’s belief that she does not need help (her implicit knowledge) despite her explicit behaviours having shown otherwise on more than one occasion (her burning food and becoming lost.)

Simone’s awareness of her difficulties may be hampered by short term frustration, worry and giving priority to another concern: her daughter (Howorth & Saper 2003.) In another study, people recently diagnosed with AD would discuss various aspects of their illness but would not us the term AD to label their experiences. This was while they would resist any movement towards categorisation of their symptoms as AD creating what MacQuarrie (2005) called a “paradox” that seemed to preserve the person’s sense of self, or agency, in the face of cognitive decline. Living with AD should not be termed as acceptance or denial of the condition but rather as this “paradox” of understanding that takes into account the acknowledgement of, and resistance to, the condition (MacQuarrie 2005.)

And so Simone’s desire to live a “normal” life may require her own assessment of risk to be subject to a process of constant reappraisal and adaptation depending on the progress of her condition if she is to live safely (Mitchell & Glendinning 2007.) She may, after having difficulties with certain ADLs, come to realise that she cannot live safely doing these activities. And, depending on her level of insight, she will more than likely require a great deal of input from the CMHN in doing this which is when the CMHN should assess risk.

Risk assessment is a major concern for any CMHN and they are encouraged to identify, manage and reduce risk. There is a preconception about those with dementia presenting a risk mainly to themselves through, for example, wandering or getting lost, as Simone did in a previously familiar place. However, as is evident from Simone burning food recently, this risk may affect others, in particular her daughter (Manthorpe 2003.)

Simone’s home is “well equipped for both of them” but the nurse should suggest to Simone that an OT come to review the equipment. In particular, the cooking equipment should be looked at and safety measures considered. An isolation valve for the cooker could be fitted, or the gas cooker replaced with electric. Gas detectors and smoke alarms may be used and these can be linked to external warning devices to alert others if necessary. These measures can ensure an adequate level of autonomy remains with Simone but that her safety is greatly increased (Alzheimer’s Society 2010.)

Other safety strategies could be discussed with Simone and her daughter around her likelihood of becoming lost or wandering again. Alzheimer’s Scotland’s (2010b) advice to carers, in this case Simone’s daughter, is to always have a recent photograph available with a list of identifying features. With this, a list of familiar places the person may go would be useful for the police in the event of Simone going missing. This will be particularly useful as her daughter may be limited in her ability to search for her mother herself.

Thus I have shown how a care plan could be initiated for Simone and with the underlying evidence, how it could be further developed in future depending on the progression of her condition.

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