Dementia is a progressive disorder of the mental process caused by brain disease or injury and marked by memory disorders, personality changes and impaired reasoning (McDonnell, 2013). According to Alzheimer's Society (2007), there are currently an estimated 683,597 people with dementia in the UK (Alzheimer's Society, 2007). The aim of this essay is to analyse the spectrum of needs in relation to older people diagnosed with dementia and to evaluate the implications for professionals working with this service user group. Dementia cases are increasing with the ageing population, thus, making it a priority for health, local authorities, private and voluntary organisations (Alzheimer's Society, 2007). This essay will define the key terms: needs, want and person-centred care. Next, the needs of older people with dementia will be analysed using some needs theories; and the implications for professionals evaluated. This follows an exploration of the strengths and limitations of service user provision.
In the context of this essay, 'needs' are services/resources a patient or a family carer have to have, while 'wants' are services/resources they would like to have. In nursing and medical care, needs typically emerge from ill health, trauma, disease or other health-related life events with an emphasis on prevention, treatment or some form of management (Cameron, 2006). Needs are often evaluated by professionals using different factors which includes: biomedical measures of health status, self-report, health status indicators and geographical variations (Anderson, 2008).
Each dementia patient is different with varying needs, preferences, life history and experiences (Doerr, 2015). To meet their specific needs and develop them to become independent, their support ought to be person-centred (Alzheimer's Society, 2015a). A person-centred care is a care that recognises a service user's individuality and personal history, and understanding the world from their perspective (Cameron, 2006). ‘National Dementia Strategy’, published by the Department of Health (2009), advocates for person-centred care at the forefront of a campaign to help people living with dementia to lead a good quality life. By forming a therapeutic relationship with the person, being compassionate and a non-judgemental approach will help develop this strategy further (National Institute for Health and Care Excellence (NICE), 2013).
The spectrum of 'needs' with regards to dementia is evaluated with references to Maslow's, Bradshaw's and Dean's needs. Services should be geared towards meeting these needs, as social problems are the results of these needs not being met. Various professionals from the healthcare, social care, and voluntary services are typically involved with dementia patients. Professionals may include social workers, general practitioners, dieticians, district nurses, physiotherapists, speech and language therapists, and occupational therapists.
Voluntary organisations provide different innovative services for dementia patients and carers. They benefit the public in ways the law says is charitable (NCVO, 2017). They make provisions for advocacy, self-help, information, and training across all parts of the UK. For instance, the Alzheimer’s Society: provides helpline and support for carers, runs quality day and home care, funds medical and scientific research and gives financial assistance to families in need (Alzheimer’s Society, 2017). Dementia Voice: in partnership with Housing 21, is responsible for the management and development of specialist care provision, research, and training (Blood and Bamford, 2010).
Voluntary settings can be influenced in many ways by policies, legislation, service provisions, and funding. An estimated £11.7bn is contributed by the sector to the UK ‘gross value added’ yearly, however, at the start of 2010, 59% of charities were affected by the recession (National Council for Voluntary Organisations, NCVO (2017)). During each quarter of 2011, most reported a worsened financial situation over the previous year (NCVO, 2017). Recently, the sector experienced an increased demand for services, rising costs, and an unusual fall in income, still, with the understanding that their income is reducing, the sector has expanded levels of service provision (NCVO, 2017).
Maslow's first stage (physiological and biological needs) and second stage (safety needs) relates to a dementia patient's ability to shelter himself, eat/drink, wash-up/dress-up, feel safe and many more to adjust to the change in behaviours and cognitive abilities (Doerr, 2015). The Care Standards Act (2000) could be applied here. Under this act, dementia patient can get a family carer to help with washing or dressing, especially in the advanced stage when they find it difficult to do simple tasks. This legislation affects the patient care as carer must follow rules, like ensuring that patient's privacy and self-respect is maintained. This would avoid putting him/her in a worthlessness situation. This legislation also makes sure that people with dementia are treated equally (not discriminated against) and have suitable accommodation to stay in.
Addressing the first stage (physiological and biological needs) and second stage (safety needs) should start from a good diagnosis among those with symptoms of dementia. Being aware and becoming well-informed of the diagnosis helps in substituting patients and families original fears with knowledge and understanding. This knowledge and understanding help encourage precious moments that support the patient’s ability to feel safer and more comfortable (Bakker et al., 2010).
The best professional intervention in addressing the biological and physiological 'needs' are Cognitive Behavioural Therapy (CBT) and family systems model. They help dementia patients improve their day by day wellbeing by taking care of their social, physical and emotional health (Alzheimer’s Society, 2007). As dementia patients experience an unexpected change in environment, CBT can help in dealing with issues of daily wellbeing (Adams and McClendon, 2006). Another intervention that can be of help when providing support with Maslow's first stage (physiological and biological needs) and second stage (safety needs) is the family systems model. With the help of this model, professionals will develop an understanding of the family dynamics, thus, providing them with information on what the support system is like along with resources needed to be of assistance to best help the family (Roach et al., 2014).
The 'belongingness and love needs' of Maslow's hierarchy relates to a dementia patient's ability to love, feel affection, friendship and intimacy. This could be in their relationships with their partners, friends, work groups and family systems. The interventions that can be used to help with Maslow's love and belongingness needs are community intervention, music therapy, dance therapy, art therapy, group work and family systems model (Roberston et al., 2013). An individual's quality of life can result in a positive psychological well-being through improvement from dance, music, and art therapy (Tay et al., 2014). A good psychological care should involve people with dementia attending training and interventions as ‘experts by experience’ (The British Psychological Society, 2016). However, this is not always the case, especially in complex dementia where service users are incapable of making decisions.
Maslow's (1943) 'esteem needs' relates to dementia patient's ability to feel purpose, recognition, achievement, freedom, authority, prestige, self-respect, and respect from others (Doerr, 2015). This could be the feeling of worthlessness in life after being diagnosed with dementia and the feeling of being a burden on others. The best professional interventions to address the patient’s ability to gain self-esteem are CBT, grief facilitation, and some group work (Adams and McClendon, 2006).
Bradshaw (1972), identified needs in four categories: normative need, comparative need, felt need and expressed need. The normative need is represented by service users who fall below a set standard (McWalter et al. 1994); the comparative need is characterised by groups, not in receipt of a service where two similar groups are compared for access to service; the felt need is represented by the need which service users feel; and the expressed need or demand is usually described as felt need in action (Bradshaw et al., 2013).
Not all needs can be expressed or demanded. Considering that most service users requiring social services are often those not capable of taking decisions, they do not often voice their demands. Needs could also not be expressed for cultural reasons. This is clearly evident in black and minority ethnic carers of people with dementia, where giving care is considered a natural thing to do, this can mean that carers do not ask for professional help as this might be considered a failure on their part to carry out their caring duties (Social Care Institute for Excellence, SCIE (2013)). It is also normally taken by policymakers that ‘no demand’ means ‘no need’. (Bradshaw et al., 2013).
Although Bradshaw's (1972) 'felt needs' could be equated to what service users 'want', but it is deemed an inadequate measure of real need, as misjudgement could happen in the process which may be favourable or unfavourable to service users (Bradshaw et al., 2013). Hence, it is not a true measure of need, since it is limited by the perceptions of the individual (Cameron, 2006). This is clearly the case in profound dementia, where service user may be unable to express his/her 'felt needs'. He/she is unable to accurately perceive needs, so may not recognise his/her need for 24-hour support (McWalter et al., 1994). When this happens, it becomes up to the professionals to apply relevant policies and legislation.
The Mental Capacity Act (2005) may be applied here. This legislation makes provision for service users to be looked after by carers in the day or be in full-time care, where they will be looked after 24 hours a day. The act also makes it possible for their finances to be taken over if they do not understand it. It equally makes sure they cannot be judged by people for their mental health issues. SCIE (2015), recognises that a social worker may need to decide if a service user can make a decision between staying at home or moving to a care home. Despite the legal obligations on care providers to involve service users as set out in the Mental Capacity Act (2005), over a quarter were still not involved in decisions about their care (Alzheimer's Society, 2015b).
Dean (2010), argued there cannot be one true meaning of a word like 'need'. He identified needs in four categories as inherent needs, interpreted needs, thin needs and thick needs. Dean developed a fourfold taxonomy of need and each resulting quadrant gives rise to a different social policy approach (Citizen's Income Trust, 2011). Like Maslow's hierarchy of needs, Dean's needs implies that service user's humanity depends on social engagement and self-fulfilment. The implication to professionals is in its universal and unconditional approaches to social policy (Citizen's Income Trust, 2011).
There is no doubt difficulties are encountered with the definition of need theories. Maslow, Bradshaw, and Dean considered what 'needs' are and how we can think about them in different ways. Bradshaw four stages of needs and Dean's fourfold taxonomy of need presented a different explanation of needs. Contrary to Maslow's needs definition, Bradshaw's approach is more flexible and shows that different definition of needs is necessary for different groups (Robinson and Elkan, 1996). Unlike Maslow and Dean, Bradshaw maintained that 'needs' are equated to 'real needs' if all four 'needs' are present (Bradshaw et al., 2013). As argued in Fleming (2012), not all 'needs' described by Maslow are applicable to everyone, since not every individual has a need to belong. Fleming (2012), also suggested an individual's action may be in reaction to some other needs at one time.
With regards to dementia, the 'needs' identified by Maslow, Bradshaw, and Dean may not all be met because most service users cannot communicate their needs. Family and professional carers may also have difficulty recognising their feelings as they may not understand they are bitter, in pain, ill, starving, thirsty, hot or cold. Consequently, their needs stay unfulfilled and unmet. The weakness in the current policy response to the service user group and their carers would result in an extended unmet needs by the health care and social services (Alzheimer’s Society 2007). As an implication, there will be deterioration in their health. Also, the Mental Capacity Act (2005), affects patient's care because it allows them to make their own decisions, for instance, if they do not want to go into a care home or take medication. The legislation makes sure they have the freedom to make decisions on their own. NICE (2016) stipulates healthcare professionals (HCP) should take person’s choice and preferences into account and consider family member’s information to provide Person-centred care.
Continuing participation of service user is encouraged in dementia as they are underrepresented in participation processes. 'Service user participation' is the process of involving a current or previous service user in the planning, development, and delivery of that service (NHS England, 2015). Service user involvement matters because NHS England (2015) recognises that service user direct experiences of using services, makes them have a unique insight into what works, which can be used to improve services. Key policies and legislation have made service user involvement in the UK healthcare and social care services a statutory duty. These include The Children Act (1989) and the Community Care Act (1990). Although there are professional mandates to promote equal opportunities, respecting diversity, different cultures and values, however, for service user's involvement to be successful, the imbalance of power between providers and service users must be reduced (Braye, 2000).
In conclusion, this essay successfully identified and analysed the variety of needs in relation to old people with dementia, and it clearly evaluated the implications for professionals working with them.