A Family Affected By Elderly Dementia

Introduction

This is a case study of a gentleman with dementia, a condition defined by the World Health Organisation (WHO, 2003) as a “syndrome caused by a range of illnesses” and which affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment (p.1). Dementia can have a huge impact on health, well-being and quality life for both the person with dementia and their family. It can result in deep feelings of loss for the person with dementia, who often can no longer do all of those activities that were once an enjoyable part of their life. Similarly, family can feel a sense of bereavement at ‘losing’ loved ones to dementia, a condition that often changes the personality of the person who develops it (Doka, 2004). This provides the rationale for gaining further insight into the care and support needs of people with dementia and their families via case studies such as this one. In particular, this case study will focus on every day and night decisions that affect the person with dementia, including activities of daily living, social activities, and most importantly communication and inclusion.

The case study will be formed from a review of case notes for which permission was initially sought from the appropriate line manager as well as from the client with dementia and his family. The client was shown his case notes in order to ensure that he was fully informed as to the documents being requested for use. The client can read and communicate verbally, supporting this method of establishing informed consent. He was also given the opportunity to ask questions.

The case study will commence with an introduction to the gentleman with dementia, as well as a description of the current circumstances surrounding his care and the involvement of both himself and his family in care plans and decision-making. Theories and models related to communication and inclusion will be reviewed, followed by the rationale for the participatory approach utilised when working with the client and his family. The case study will conclude with a summary of the key issues identified within the case study, as well as any reflections for future work.

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Client Profile

For the purpose of this case study, the gentleman with dementia will be referred to as ‘Bob.’ His real identity and that of anyone else within this case study will remain anonymous in order to maintain confidentiality. Bob lives in residential accommodation with other people who have dementia. His profile is presented in Box 1, using the Roper, Logan and Tierney Activities of Living Model (Roper et al, 2000) to present a holistic overview of Bob’s care needs on 12 activities of living (ALs) relevant to communication and inclusion and essential to health and well-being.

Box 1: Bob’s Profile

CLIENT PROFILE

Patients Name: Bob Stephens Age: 95-years old (Date of birth: 22nd October, 1915) Ethnicity: Jewish (non-practicing)

Activities of Living (D=dependent; I=independent):

– Maintaining a safe environment D I

– Communication D I

– Breathing D I

– Eating and drinking D I

– Elimination D I

– Personal grooming D I

– Controlling body temperature D I

– Mobilising D I

– Working and playing D I

– Expressing sexuality D I

– Sleeping D I

– Dying D I

Comments: Bob shows dependency in two ALs (i.e. maintaining a safe environment; working and playing) and requires support in four ALs: (i.e. communication; personal grooming; mobilising; elimination).

Influencing Factors

Biological: Bob is 95-years of age. He requires a hearing aid and walking stick.

Psychological: Bob’s dementia can sometimes result in confusion and disorientation. He also becomes tearful frequently and does not participate in residential activities.

Socio-cultural: Bob is Jewish, but non-practicing and with no preference for Kosher food. He has a wife, Sue, who visits twice a week and with whom he has a close and affectionate relationship with. He also has a son, John, who visits him regularly.

Environmental: Bob does not like noisy environments.

Politico-economic: No current issues.

Additional Notes: Bob has a care plan devised to reduce the risk of harm to himself and others. Despite this, Bob’s carers have noted that he is polite and charming when his situation and circumstances are to his preference.

Bob was born in the East End of London. He retired from the Royal Air Force (RAF) 15-years ago and expresses that “this was my life.” Sue has shared that it was after retirement that Bob lost interest in all activities, including socialising.

Relevant Theories and Models

The theories and models relevant to this case study are those pertaining to communication and inclusion. These two issues are complementary in that communication is an important component of working with people who have dementia and their families in a participatory way that encourages inclusion. Theories of communication are described, followed by a definition and outline of social inclusion.

Communication

There tends to be two broad perspectives on communication, these being Transmission Models and Communication-as-Interaction Models. Transmission Models purport that communication is the transference of information from the sender to the receiver, with the sending hearing or reading the message as they interpret it. Although this model of communication is limited in its simplistic view of communication, it does hold some relevancy to Bob’s situation. Within the Transmission Model, the concept of ‘noise’ is used to refer to the wide variety of different factors that can affect the success of transmitting a message from one person to another. Since Bob is hard of hearing and wears a hearing aid, he can find noisy environments difficult to cope with. He does not like noise and thus it is important to communicate with him in a quiet environment where there is little distraction.

Communication-as-Interaction theories view communication as a shared process with active participation from all parties, thus recognising the complexity of human interaction. This model of communication proposes that the meanings that emerge from the interaction are affected by a wide range of psychological and social factors. As with the Transmission Model, this model is also relevant to Bob. In particular, it provides insight into why Bob might shout or become verbally aggressive in noisy environments. In such situations, psychologically Bob is likely to be overwhelmed. Furthermore, due to social withdrawal following retirement, it is plausible that Bob becomes anxious in social situations that are no longer familiar to him.

Robb et al. (2004) note that in the case of dementia care, Communication-as-Interaction perspectives, which take a biopsychosocial approach, provide a more person-centred element to caring for an individual with dementia. Therefore, whilst Transmission Models are also relevant to Bob’s situation, it is important to also apply elements of Communication-as-Interaction, especially in efforts to promote inclusion. Indeed, viewing communication as a shared process is productive of supporting social interaction.

To expand on the role of interaction in communication and inclusion, the Symbolic Interaction perspective provides further insight. This perspective posits that in individual’s identity is formed on the basis of messages they receive from other people about the kind of person they are and the nature of the world they live in (Kontos, 2005). Bob does experience agitation and frustration and it is important to be aware that if carers or family react to this in a consistently negative way, it is likely that Bob will use this information to form a self-identity that promotes social exclusion through the avoidance of interaction with others. Bob, as do other people, has a daily regime and if this is changed he can feel unsettled. An understanding of this via insight into the theory of Symbolic Interaction can facilitate better management of Bob’s care needs. Utilising the Symbolic Interaction approach further, there needs to be an emphasis on positive communication being about talking with the individual rather than at them, as has been the case with Bob (Parker, 2003).

Inclusion

Social inclusion has been defined by the Local Government Improvement and Development Group (2010) as relating to “the ability to fully participate in normal social activities, and engage in political and civic life” (p.1). In contrast, social exclusion has been defined as relating to “being unable to participate fully in normal social activities, or to engage in political and civic life” (p.1). Using these definitions it becomes clear that social inclusion is a broad concept involving a wide range of social and political activities. In terms of mental health and dementia, inclusion involves maximises opportunity personally and within the wider community (MIND, 2008). Thus, social inclusion is about ensuring that people have the opportunity to get involved in the activities they want to get involved in and are not excluded from society on the basis of any disability. It is believed that in the field of dementia care, social inclusion begins by changing attitudes towards people with dementia and considering what people can and want to do, i.e. giving them a choice in their care, in the way they live, as well as helping them develop the tools to self-manage effectively and thus maintain their independence. As described within this case study, maximising opportunities and providing Bob with choices are a key part of communication and interaction with him.

Participatory Approach

A person-centred approach has been taken in supporting Bob and his family with issues of communication and inclusion. This has been essential in ensuring that the issues important to Bob and his family have been targeted, as opposed to care being based on assumptions or preconceptions of carers (Whitworth et al., 1999).

The Participation Ladder, developed by Arnstein (1969), has been applied in work with Bob and his family. This model is based on the observation that “… the fundamental point [is] that participation without redistribution of power is an empty and frustrating process for the powerless. It allows the power holders to claim that all sides were considered, but makes it possible for only some of those sides to benefit. It maintains the status quo” (pp. 216-233). This Ladder is particularly pertinent in dementia care, where an imbalance of power comes from the person with dementia being in a vulnerable position compared to their carer.

The Ladder comprises eight levels, as follows:

Manipulation – this is a non-participative level where the aim would be to cure or educate Bob.

Therapy – this is also a non-participative level where the aim would be to cure or educate Bob.

Informing – this is an important first step to legitimate participation, but often the emphasis is on a one-way flow of information from the carer to the individual with dementia.

Consultation – another important step towards participation, which would comprise surveys, meetings and enquiries with Bob and his family.

Placation – this step would enable Bob and his family to be involved in planning his care, but the power would still reside with the carer as they would make the final decisions.

Partnership – this is when power is redistributed through negotiation, in this case, between Bob, his family, and professionals involved in his care. Planning and decision-making responsibilities are shared, supporting the co-creating health initiative currently underway by the Health Foundation (Health Foundation, 2010). This initiative promotes active partnership between individuals receiving care and their carers. This is the step of the Participation Ladder utilised within Bob’s care.

Delegated Power – Bob would hold the majority of power for certain decisions.

Citizen Control – Bob would have complete control and power over his own care, which is not always feasible within healthcare, especially in the care of people with dementia.

Work with Bob resides on level 6 of the Ladder, partnership, as Bob can communicate verbally and shows clear preferences and needs, which demonstrates a capacity to identify his own needs, voice these needs, and make decisions accordingly. However, there are instances where Bob can become confused and agitated and might not make the most appropriate decisions; this is when carers and family become more involved in the decision-making. In particular, in order to promote social inclusion there are some instances where Bob does need encouragement or motivation to interact with others or with the community. Input from carers and family on such matters are vital for Bob to maintain his independence and quality of life.

Bob’s family have been included in every day and night decisions that affect themselves and Bob. Families can experience the same power imbalance as those with dementia in that once the person with dementia enters care the family lose a sense of control. They also lose an established ‘role’ within the relationship. Involving them in care plans regarding communication and inclusion initiatives can help them maintain a satisfactory role and remain involved in the person’s life. It also adds some structure and meaning to their visits, which is important because some families can find this a stressful situation. Loss of control is heightened by being excluded from decisions, difficulty in getting information, lack of interest in their special knowledge of the person, and negative reactions to their worries and concerns (Woods et al., 1999). The family have a good relationship with Bob’s carers and in particular with the manager of the residential home, who has developed a unique bond with Bob that others have not been able to establish. Thus, Bob’s family are comfortable asking questions and raising concerns. They are also closely involved in planning activities and opportunities with Bob, which has greatly facilitated the trust built between Bob and the manager of the residential home.

Discussion of Case

Bob’s case notes and care plan highlight a key issue with communication and inclusion being that he can become agitated and frustrated, resulting in him striking out at carers and other residents. The goal of his care plan has been to reduce the risk of harm to others and keep Bob and others safe in order to enhance inclusion. Bob is most likely to become a risk when he becomes agitated or frustrated, which most often arises when he experiences confusion and disorientation. This can result in him shouting at carers and other residents. It is noted within the literature that feelings of confusion can be a way of people with dementia retreating from an overload of painful information; it is not always caused by neurological impairment (Cheston and Bender, 2000). It could be that Bob is struggling to make sense of his life and might even be experiencing feelings of fear and grief at the loss of past activities and living circumstances that have resulted from dementia.

Bob’s care plan advises that in these situations, when Bob becomes a risk to himself and others, that carers speak to him in a calm and polite manner. It is important that they do not use challenging or confrontational language or gestures, so as to avoid arguments and disagreements. It is also advised that efforts are made to divert Bob’s attention from the situation that has caused his agitation. However, Bob does pick up on these diversion tactics and will challenge them, thus carers try to divert him with activities he enjoys and that involve him in communication with others. For example, Bob enjoys reminiscing about the past, talking about his birthplace, and his time in the RAF as a pilot. His family have helped with locating his flying logbooks and Bob enjoys talking about these at length. Indeed, these are instances were Bob engages well and according to the Communication-as-Interaction model discussed previously. In particular, Bob becomes verbally enthused by the interaction, but can also focus on listening to others.

An important component of enabling communication and inclusion in dementia care is getting to know someone and forming a relationship. One way in which this has been achieved with Bob has been to listen to his stories about the past and to engage his family in this process. The literature suggests that such an approach can also help build trust and balance power (Bartlett and O’Conner, 2010). It is easy to get to know Bob as he enjoys talking about his past experiences. It has thus been vital that carers hone listening skills (i.e. attentive listening and person-centred listening skills).

It has been found that using this technique to divert Bob away from frustrating situations has also helped carers in their reactions to Bob’s outbursts. This is extremely important as, according to the Symbolic Interaction model discussed previously, repetitive negative reactions could be used by Bob to form a self-identity that promotes social exclusion through the avoidance of interaction with others. Rather than raising one’s voice with Bob or provoking further agitation, carers identify the reasons behind Bob’s frustration. For example, it could be the result of an inability to communicate need in the social context. Evidence of this can be seen in the way that Bob can become easily frustrated if his morning routine is changed. An understanding of this as opposed to a focus on his abusive verbal response facilitates better management of these situations when they arise.

This approach supports the biopsychosocial approach, which suggests that behaviour and non-verbal communication has a meaning and provides insight into how a person is feeling or what they might be thinking. Indeed, Stoke (2002) suggests that meeting needs requires some flexibility in the care environment; even if needs cannot be met or behaviour changed, understanding what it means can make it easier for staff and family to accept. Working out the meaning of behaviour can be facilitated by taking into consideration a person’s history, physical and mental health, social context, and their abilities and disabilities. For example, talking to Bob in an inclusive way has been important. In particular, being mindful of phrases used to refer to Bob, either to him or his family, and the implications of this have been considered (e.g. referring to Bob in a personal and individualised way as opposed to as a ‘dementia sufferer,’ or ‘patient,’ both of which could promote a victim role).

Bob’s hearing difficulties and dislike of noise are likely to explain some of the agitation and frustration experienced when others are around. Bob can be offered one-to-one sessions in a quieter room when other residents around, but it is important not to isolate him and to encourage reintegration with the group afterwards.

Bob’s other interests, such as reading the newspaper with his breakfast each morning, is also used to facilitate communication and inclusion. The fact that Bob enjoys reading newspapers provides him with knowledge of current affairs and what is going on within his local community. In order to maintain and promote this activity, special care is taken to ensure Bob has choice in which newspapers he reads and when he reads them. In particular, when Bob receives his newspaper he prefers that all cutlery, teapots and crockery are placed at his table. Choice is very important to Bob and carers make every effort to provide choice in every day and night activities, including the provision of a menu so that he can select his choice of lunchtime sandwich on a daily basis. This provides more than choice, but also promotes continued independence.

In order to facilitate communication, a communication log has been devised for Bob in order to ensure that all carers are sensitive to the way in which he communicates. For example, when Bob says that he needs an ‘appointment,’ this means that he needs the toilet. Making all carers aware of this ensures that Bob’s dignity and is preserved and he is not confronted by embarrassing situations that might make him withdraw.

Another sensitive area for Bob is that he does need assistance with personal hygiene. Bob is aware of his appearance and becomes agitated if he is not clean-shaven or if his clothes are unkempt. It is known that people with dementia can avoid situations that might cause embarrassment or shame, which might explain Bob’s social isolation. It also provides emphasis on resolving any issues that might further prevent social interaction through shame or similar feelings.

Social well-being is a core aspect of inclusive care practice and involving people, as well as making sure they feel in control and connected to the world around them. The literature suggests that social well-being is achieved through social relationships, involvement in social activities and participation in the society (Victor and Scharf, 2005). It is believed that a lack of social well-being occurs when people do not have opportunities for social contact and relationships, lack friends and support networks and are socially excluded. Bob does need encouragement and motivation to keep physically active and interact socially, but including his wife and family in this process has enhanced the effectiveness of any efforts made to assist Bob with inclusion. Furthermore, opportunities are made available to Bob, such as going to the coffee shop or visiting places of interest, such as RAF establishments. Since Bob requires a walking stick, the locations of planned outings are first checked for accessibility in order to ensure Bob is not confronted by problems of exclusion when accessing the community.

There are many interventions that can be used to improve communication and enhance inclusion for people with dementia. One such intervention is advocacy (Cheston, Bender, and Byatt, 2000). The need for dementia advocacy is becoming more recognised in the field and it is evolving to enable people with dementia to have more self-determination (Cantley and Steven, 2004) and to protect them from harm and abuse (OPAAL UK, 2009). There are a variety of models and approaches to advocacy, including professional advocacy that can be received from the professional carer and self-advocacy which is when someone with dementia speaks up for themselves. Both of these are pertinent to Bob’s situation as there are some areas where he can act as self-advocate, such as expressing his preferences for his morning regime. However, there are instances where the professionals caring for Bob need to act as his advocate, such as when informing new staff of Bob’s communication needs, etc. There are also instances where Bob’s family can act as his advocate, for example, in circumstances where they know more about Bob than the professional carers do but where Bob is unable to express his needs. By including Bob’s family in his care, the importance of Bob’s time in the RAF and the impact that retirement had on his health and well-being have provided key information on ways to communicate and include Bob.

The need to offer more support for family carers has been recognised in the National Dementia Strategy (2011), where increasing emphasis has been placed on working with and supporting families of people with dementia. Furthermore, the literature and public policy encourages ways of working that take more account of the wider family, empower rather than disempower family members, and build partnerships between professionals, families and people with dementia (Moriarty and Webb, 2000). This is promoted due to the well-documented benefits to people with dementia of working with their family, which has also been evidenced in work with Bob and his family (Oyebode, 2005).

Overall, Bob’s care involves a great deal of facilitation, which has been defined by Kitwood (1997) as “enabling a person to do what otherwise he or she would not be able to do, by providing those parts of the action that are missing” (p. 91). Facilitation is aimed at helping the person with dementia to maximise their own potential and express themselves as fully as possible. Facilitation can also, as has been the case with Bob, act as a safety net, helping to reduce fear of failure that may prevent some people with dementia from initiating or participating in an activity. It is an important aspect of the person-centred approach taken within Bob’s care and is further referred to by Kitwood (1997) as ‘positive person work.’ In terms of the communication and inclusion support provided to Bob, facilitation has meant not just providing or organising activities, but being involved in helping the activity to take place. To achieve this, it has been crucial to be aware of how Bob is feeling, how he is responding to what is happening, and sharing the experience with him. It has also involved being sensitive to the parts of the activities that Bob can no longer partake in, such as flying aeroplanes. In this sense, Kitwood’s (1997) theory of dementia care and the interpersonal process utilises the Communication-as-Interaction approach. Interacting with Bob and his family on an interpersonal level has facilitated communication and inclusion.

Conclusion and Final Reflections

This case study has provided a detailed description, exploration and analysis of every day and night decisions that affect a gentleman with dementia, Bob, and his family in regard to communication and inclusion. A key point emerging from this case study is the link between communication and inclusion and the importance of recognising that one cannot exist without the other. Communication is needed to facilitate inclusion and vice versa. Furthermore, the importance of involving family in every day and night decisions that affect the person with dementia have been highlighted as not only improving the well-being of the family and the person with dementia, but also as being a way in which a deeper and more trusting relationship can be built between the carer and the person with dementia. On establishing this bond, communication and inclusion become easier to support and facilitate when working in partnership with the person who has dementia. This has been the case with Bob and his family. A partnership approach to working with Bob has been vital in maintaining his autonomy and independence, which in turn has helped form a supportive relationship productive of communication and inclusion.