Mace and Rabins (1981) made four connected statements about dementia:

This chapter will expand on the first three statements and allude to the last.

As health or care professionals, we should always remember that people have lived 60 or 70 years before the onset of dementia – it does not define them. Each of us comes in and out of people’s lives in just this small portion. Really we might be a bit important but in the totality we are just a small-bit player.

There is damage to the brain

Each individual is defined by actions taken or not taken, that is, behaviour, evaluated against social values and context. Some behaviour may be considered quirky or unusual, amusing, annoying, tolerated or admired. Some may be considered sufficiently different or out of character to indicate intervention by medical, legal, spiritual or educative authorities to bring the behaviours into acceptable norms. Some behaviour engenders distress, pity, fear or disgust to such a degree that removal from society, temporarily or permanently, into the control of experts, is the best way to keep the individual and society safe. The challenge for individuals and communities is to determine at what point a quirk or change in behaviour goes beyond annoying or tolerable and becomes a problem for the person, their family and friends or the community. There is no clear definition of ‘normal’ behaviour. This is the challenge presented by a neurocognitive disorder (NCD), or dementia.

NCDs are the result of chronic or progressive damage to the brain. To most health professionals, this is an obvious statement of truth. However, it is the changed and changing behaviour and actions of people that provide the external evidence for the changing brain, and changing behaviour can be interpreted in many ways. In the beginning, the changes of behaviour are often subtle and insidious in nature, and easily ignored or explained away as a normal part of ageing or a reflection of the person’s personality, or a natural reaction to stress or changed circumstances. It is virtually impossible to determine when the disease began. As behaviours become more concerning, other explanations, based on deep cultural or religious beliefs, may emerge; for example, normal ageing and response to getting older, madness, the invasion of angry spirits, an expression of God’s wrath, karma or atonement for sins. These different understandings of the causes influence the quality of relationships with family and friends; how, or whether, they continue to be part of the community; and the nature of support and treatment received.

Major NCD (dementia) is a difficult diagnosis to make. There is no one test that will tell us whether a person could be accurately diagnosed with this disorder. Part of the reason is that the disease is a cluster of symptoms and each symptom could have a number of different causes. Such causes include delirium, depression, drug side effects and other physical illnesses causing alterations to the brain (e.g. brain tumour, increased pressure in the brain). To reach the diagnosis, these other causes need to be excluded, and that may take both multiple tests and some considerable time. Another problem is that dementia itself is not one disease but may be caused by many different processes. So we have vascular dementia, Alzheimer’s disease and so on: all dementia but with different pathological processes to be identified.

A diagnosis based on thorough expert investigation is relatively rare. The process is resource intensive, takes time – measured in months rather than weeks or days – and requires the expertise and collaboration of many experienced health professionals. Many Australians with dementia never receive a diagnosis, or the diagnosis is made in the later stages (Kitwood, 1993). For many others, the diagnosis is given without full investigation and, occasionally, people who have treatable causes of behavioural change are labelled with dementia. Possible reasons to explain this situation are many. For example, the person may be unaware that there is anything wrong and resist attempts to visit their GP or specialist; the family may resist the possibility of neurocognitive decline; the GP may not be able to observe any significant changes or listen closely to the family member in a short consultation; confidentiality concerns may mean that the GP does not discuss the patient with the relatives and therefore misses vital diagnostic information; or access to appropriate services may be limited.

A diagnosis of dementia is a two-edged sword. Knowing that there is a disease process affecting behaviours can be an enormous relief to the person and their families, struggling to understand and support each other. As with all diagnoses of a life limiting nature, there is time and opportunity to make informed decisions and plans to manage the future. Access to appropriate services and support groups, such as respite, counselling and home help, becomes available, and the marshalling of informal support from family, friends or neighbours is possible. On the other hand, there is still much stigma associated with cognitive loss and behavioural changes so that the person and the carer may experience social isolation and lose hope. The course of the disease is unpredictable and, as with many chronic and degenerative diseases, planning for the future can be challenging.

The living experience of the person with dementia is often overlooked. This is because the focus is on the losses associated with the disease and the resources needed to support the person and their family.

The person is still there

Dementia is generally associated with older age although this is not always the case. It is now better recognised that dementia can also occur in a person’s forties and fifties, or occasionally even younger. Whether in their forties, fifties, sixties or seventies, the person living with dementia has had many decades of life experience. They have been a ‘person without dementia’ far longer than a person living with dementia. Such life experience builds on natural talents and personality, and provides opportunities to develop skills, knowledge, attitudes, assets and relationships. These resources influence resilience and this in turn affects their response to the challenges of dementia. As described below, Kitwood (1989) pioneered an approach that incorporates these factors into each person’s care.

Philosophers across the ages have debated the question of what makes a human a person, especially in the context of how it makes humans different from other animals. Almost universally these definitions have included some reference to the ability to reason and to remember. (Descartes, 1644: ‘cogito ergo sum’ [I think therefore I am]). Therefore, it is argued by some that a person who cannot, or has lost the abilities to, remember and reason is no longer a person. Being a non-person can mean that their rights, such as the right to freedom of association or retention of property, are no longer valid. Kitwood (1989) described this as ‘malignant social psychology’.

Nancy Mace (Mace & Rabins, 1981) and Tom Kitwood (1989) were early advocates that a person is not, nor should be, defined by their disease. Kitwood’s famous equation ‘SD = P + B + H + NI +SP’ succinctly explains that the clinical manifestations of the neurological impairment, or symptoms of dementia (SD) were more than the neurological impairment (NI) alone. The person’s personality (P), their life history (background) (B), health status (H), and the social environment and the degree to which the person’s abilities are fostered and limitations supported (SP – social psychology) can exacerbate or ameliorate the effects of brain damage (Kitwood, 1993). Kitwood argues that, while personality and biography cannot be altered, and the neurological impairment is either chronic or progressive in nature, it is possible to ensure that a person’s overall health and welfare can be promoted so that a life of good quality can be experienced throughout the trajectory of dementia.

Nolan et al. (2004) expanded Kitwood’s work and proposed that the social psychology around each person is expressed in relationship with others. To be truly fulfilling and empowering of personhood, the relationship should be reciprocal and the nature of connection between person, family, carer staff and health professionals should all be addressed. This further strengthens the notion that the person living with dementia is an active participant in their life, not just a passive recipient.

The family is also affected

Not all families have the skills and knowledge to support the person. Not all relationships are cordial. Family members can be emotionally close but geographically separated and vice versa.

Family members can be affected by many factors; for example, a sense of familial duty, guilt associated with not coping or shame associated with a family member demonstrating symptoms of dementia. Families are often torn between competing needs: the need to seek help, a feeling that they should be able to cope, and a lack of knowledge about how to go about getting assistance. There may be family arguments about whether or how help should be accessed. Overwhelmingly, the majority of carers are female, and caring responsibilities often result in loss of full-time work, and additional financial and time stressors. In Australia, for example, women represent 70% of primary carers (Australian Bureau of Statistics, 2012).Women may also be caught between the needs of caring for a relative with dementia and those of other family members, especially teenage children. Often families regard the use of services as a last resort.

As families are different, so are their methods of decision making. The responsibility for deciding about these issues will differ from family to family and may not be obvious to care providers. Sometimes decisions are made along gender lines with the ‘man’ of the family having the ultimate say, but often there are subtle pressures brought to bear, which may not be obvious to the outsider. Once services are brought in, families differ in the way they negotiate with service providers or non-providers. As dementia progresses, decisions about placement in residential aged care will need to be made, and this will involve another set of complex family decisions. Often these also involve financial matters, and the family members who negotiate with financial institutions are likely to be different from the ones who negotiate with home services.

These decisions are made more difficult by a number of layers of bureaucracy that must be negotiated. It is often not clear to families that they can’t just place their relative in a nursing home In Australia, they need an aged care assessment team (ACAT) assessment first, which may take many weeks. Other countries have a variety of first call services, almost all of which would require some assessment process. Dealing with government departments and processes carries its own set of challenges, which may make the task of caring more onerous. Often it is not obvious to families what is available and they may not be easily able to articulate what they need either. In the early stages of the journey, particularly, it is often ‘hit and miss’ whether a family carer accesses particular services. Care providers themselves are not necessarily familiar with all the services available; it is a specialised area.

The work of accessing services for assessment is not only that of networking and using sources of information and support. It also involves sheer physical effort. Family and carers may need to travel some distance, perhaps by public transport, and penetrate the corridors of office buildings to find the right person to assist them. Such carers themselves are often elderly and this kind of work is a particular challenge in those cases. Even for younger carers, the work of visiting government departments may need to be prioritised with competing demands around family and other aspects of the caring role.

There are things we can do

There are many things that can be done to help people living with dementia and their families through this difficult time. Primary care professionals should remember that the journey is not clear to those who have never travelled it before and that directions are needed along the way. Often it is helpful to map out what might lie ahead as time goes on; for example, to mention early on that many families find it necessary to bring in assistance, to obtain respite care and to place their relative in residential care eventually. Common problems encountered by people with dementia should be mentioned: the tendency to suffer from delirium when physically unwell, the problems associated with loss of cognitive capacities, and the loss of physical as well as mental capacity. At some point, it is important that the family is told about the terminal nature of the disease. The health professional may do this at intervals, and perhaps repeatedly give out information and brochures about how to bring in assistance, obtain respite, and so on as required. Remember that the whole primary care team is working in this way and information may come at a critical moment from another team member.

It is helpful, in this process, for the family to work through some advance care planning, where they discuss options ahead of time and preferably with the input of the person living with dementia, if they are able. This makes life immensely easier for the family at critical junctures. For example, it might be decided relatively early on that, if the person living with dementia becomes doubly incontinent, then it would be reasonable to move to residential aged care. When this possibility becomes a sad fact, it is helpful to have had this discussion and be on the same page as a family about it. As this process evolves, various legal documents should also be completed, including the will, power of attorney and an advance care directive particularly aimed at the terminal phases of the disease.

Care providers should also remember that a comprehensive approach to assessing any problems that the person may have is preferable (Garratt & Pond, 2014). As well as purely physical problems, the care provider should pay attention to the need to explain as they go along, so that the person living with dementia and the carer can understand what is happening. Any change in functional ability should be noted and any new needs that the person or family may have as a result should be addressed. Strengths, such as retained functions and strong family support systems, should be acknowledged and built upon. The emotional health of both the person living with dementia and the carer should be considered at all times and action taken if there is a need to address depression or anxiety.

Self-help and consumer/carer groups – such as the local Alzheimer’s support group (see Alzheimer’s Australia (https://www.fightdementia.org.au/), the US Alzheimer’s Association (http://www.alz.org) or the UK Alzheimer’s Society (http://www.alzheimers.org.uk/)) – may be invaluable in assisting carers and consumers. These organisations offer a range of services; for example, telephone counselling services, a library, various groups, including education and support groups, and advocacy for people living with dementia and their carers.

Conclusion

Dementia is a terminal illness. As the terminal phase of the illness approaches, providers should consider a palliative approach to care. What does this involve?

According to the World Health Organization (n.d.):

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

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