When dementia breaks into life it has a profound impact on the individual and their social network. Professionals can provide a more comprehensive and person-centred care if they understand what people with dementia and their families go through.
The impact of dementia does not always start with the disclosure of the diagnosis but may happen long before, depending on the form of dementia. Living with dementia is described from the stage where a person discovers the memory impairment, through the stage of being diagnosed with dementia, to that of the person’s attempts to integrate the impairment into everyday life.
Impact on the person with dementia
Dementia has well described symptoms including cognitive deficits, behavioural and psychological symptoms, and problems of performing activities of daily living. The impact of dementia, however, is much wider than these domains. The medical perspective needs to be complemented by a personal view on dementia.
The impact of dementia on the person
Dementia is associated with variety of different feelings and emotions, change of relationships, impaired communication, reduced competence, limited autonomy, and weakened sense of identity. It affects the person´s self-assurance, social status and other components of self. Hence the impact of dementia is not simply a result of the symptoms but is also mediated through their personal repercussions. The person-centred perspective is important because the impact of the symptoms on the person and network as well as their psychological consequences are amenable to therapeutic intervention.
A person-centred perspective on dementia
Roles and relationships: With the diagnosis of dementia, the role of a person within the family and the wider social network will change. Sometimes dementia comes into life when people are still in the productive period of their life. It is rarely possible to adjust the workplace to the needs of the person with dementia. Within the family, relationships shift and sometimes are turned upside down. Usually, the person with dementia will have to come to terms with a more passive position than previously.
Competences and autonomy: As a result of cognitive decline many – but not all – competences of a person will deteriorate. Examples are the ability to make decisions, provide consent to treatment, drive are car, make a will, manage finances or organise the household. Such capacities are fundamental for the personal autonomy and self-esteem. Since reduced competences are closely associated with increased risks it is important to find a balance between preserving autonomy and protecting the person and their social environment from hazards.
Work and finances: Dementia makes it difficult if not impossible to deal with the tasks of working life. Because of lack of awareness and / or economic pressure only few employers adopt a dementia-friendly approach and enable people with dementia to continue working, for example by reducing hours or by assigning less difficult functions. More often than not, dementia leads to loss of employment and income.
Legal aspects: The capacity to make decisions about finances, health care, or living situation will deteriorate as dementia progresses. This is illustrated below by the ability to consent to treatment with a cholinesterase inhibitor. People with mild and moderate dementia are generally able to make decisions, and absence of decision-making capacity should only be assumed at the severe stage of dementia. Supported decision-making is preferable to surrogate decision-making.
Ability of people with dementia to consent to treatment with an antidementia drug
Understanding: Comprehending the nature of the treatment, potential benefits and risks
Appreciation: Acknowledging at least some of the personal benefits resulting from treatment
Reasoning: Naming consequences of treatment, comparing alternatives, arriving at a conclusion
Choice: Providing a clear statement of preference
Human rights: It is widely recognized that people living with dementia are frequently denied their human rights both in the community and in care homes. In many countries people living with dementia are often physically and chemically restrained, even when regulations are in place to uphold their rights. Furthermore, people living with dementia can also be victims of abuse. For example, they may be beaten for being “stubborn” or exhibiting challenging behaviour. According to the United Nations the basic principles of human rights are the following:
United Nations principles of human rights
Participation: People with dementia and their carers have the right to participate in all decisions which affect life and wellbeing, and the right to have equal access to community services and facilities.
Accountability: Public and private bodies should be held accountable for ensuring that people with dementia exercise their human rights including full respect for their dignity, beliefs, individual circumstances and privacy.
Non-discrimination: People with dementia and their carers have the right to be free from discrimination based on age, disability, gender, race, sexual orientation, religious beliefs or health status.
Empowerment: People with dementia should be empowered to claim their rights than simply wait for policies, legislation, or the provision of services.
Legality: All measures related to dementia including policies and legislation, raising awareness, prevention, diagnosis, care and services as well as research
should be linked to human rights standards contained in international human rights instruments.
Emotional consequences: The onset of symptoms often elicits psychological defence mechanisms including denial, minimalisation of problems, excuses or alternative explanations for mishaps. Disclosure of the diagnosis may also cause shock, disbelief or anger. Moreover, knowledge of the progression of dementia can lead to anxiety, depression and despair. On the other hand, information about the diagnosis can also bring clarity and relief after a period of uncertainty. To deal with these emotional challenges people should be supported in adopting emotion-oriented and problem-oriented coping strategies.
Self-esteem: Reduced ability to carry out activities of daily living and solve problems, changed roles and responsibilities, and fading representation of own past achievements result in upset and insecurity. It is natural that people who experience this lose self-confidence and self-assurance. In addition, they are unsettled by the negative attitude (stigma) of the public regarding cognitive impairment and dementia.
Sense of identity: There are at least three major sources of the sense of identity or self: the memory for personal experiences including past roles and achievements, the interaction of the person with other individuals, and the person’s current habitual preferences and activities. Throughout the course of dementia, these sources of personhood are compromised. Although there is evidence the self persists to some extent, parts of it may become increasingly fragmented, distorted and outdated.
The quality of life of people with dementia
Quality of life is a multidimensional concept encompassing psychological, social, and physical dimensions. Major dimensions are activity, participation and personal autonomy, social interaction, physical and psychological wellbeing. Factors that improve the quality of life of people with dementia include the relationship to the carer, the ability to carry out activities of daily living and to participate in life. On the other hand, depression and anxiety reduce the quality of life. Age, severity of cognitive impairment, years of education and socio-economic status are unrelated to the quality of life.
Factors that determine the quality of life of people with dementia
How to support a person with dementia
Roles and relationships: Psychological counselling, either in individual or family-based format, can help a person with dementia to adjust to the changes and find a new satisfactory role in various areas of life.
Competences and autonomy: Support the person with dementia in performing activities that are important for them and that they are able to carry out, either at work, in the home or in an institution. Do not prevent or inhibit activities because they take longer or the result may not be optimal. Encourage the person, focus on preserved abilities emphasise achievements, facilitate and support purposeful activities, and avoid patronising or critique. Occupational therapists can be very helpful here.
Work and finances: Mindful managers and executives who are aware of dementia may enable continuation of work by reducing hours, assigning less demanding tasks or providing more support A social worker may find sources of financial help for people with dementia who are unable to continue working.
Legal aspects: In regard to determinations on healthcare, financial matters, living situation or advance decisions people with dementia should be supported in their decision-making ability rather than being replaced by a surrogate decision maker. Social workers and lawyers are able to recommend the best way how a person with dementia can be legally protected.
Human rights: People with dementia need to be treated with respect and dignity irrespective of their cognitive or functional impairments or behaviour changes. At the stage of moderate dementia most people gradually lose insight into their condition. However, they may still perceive when they do not receive appropriate appreciation and respect.
Emotional consequences: Try to put yourself in the shoes of the person with dementia and understand how they feel. Be sensitive of their emotions and acknowledge them as subjectively valid. Individual psychotherapy or a peer support group may help a person to come to terms with the diagnosis and restructure their lives.
Self-esteem: Wherever you can, try to counteract the impact of dementia on a person’s self-esteem, self-confidence and self-assurance. Treat the person as an adult, acknowledge preserved abilities, appreciate achievements and successes, involve the person in meaningful activities, provide encouragement and reassurance.
Sense of identity: Make yourself familiar with the person’s life story, learn about their past achievements and highlights in their biography. Use this information for supporting and reinforcing the self of the person. Appropriate techniques are reminiscence therapy or the creation of a life book.
Impact on the family
When a family member develops dementia, the people around them will experience profound changes in their lives. They need to deal with unpleasant emotions including embarrassment, shame, guilt, anger, anxiety about the future and feelings of loss, abandonment and being trapped. Moreover, one member of the family will have to take on the role of a principal caregiver. The tasks and responsibilities of caring for a person with dementia can be enriching and rewarding, but usually they are associated with huge burden, psychological and psychosomatic problems, social isolation, physical ill-health, and financial hardship.
The shift of roles, expectations and responsibilities, as well as new and unfamiliar tasks for caregivers may lead to friction within the family and conflict with previous or concurrent duties. If still employed, caregivers may need to reduce working hours or quit work entirely. Often, caregivers face this enormous challenge with little or no support from the community they live in. Reasons for taking on a caring role may include affection, but frequently the motivation is a sense of duty or pressure from the family, community, or society. Major problems expressed by caregivers are apathy and withdrawal in the person with dementia, and absence of relief as well as the impossibility of having time for themselves.
Risk factors for poor caregiver wellbeing include female gender, own health problems, and negative social interactions. The major source of distress for caregivers of people with dementia are BPSD, with depressive behaviours being the most distressing symptoms, followed by agitation / aggression and apathy.
The impact of dementia on the family
Emotions: Dementia caregivers may feel guilty for various reasons – having sought the diagnosis too late, being embarrassed by the behaviour of the person with dementia, rejecting the caregiving role, or being unable to continue care at home. Also, carers may feel frustrated or angry. Dementia is associated with a gradual loss of the person with dementia, although they are alive. This is referred to as ambiguous loss and can be particularly difficult to deal with. The loss of the loved person before physical death may also bring forth the phenomenon of anticipatory grief.
Relationship changes: Changes in relationships are usually more painful for the carer than for the person with dementia. Dementia has a significant impact on marital relationships, including loss of shared activities, loss of a companion and confidant, and reduced quality of communication quality. Physical intimacy may also be lost, although for many couples it continues to be a source of mutual comfort and pleasure. Children may find themselves in a reverse role than previously and may need to take on caring responsibilities which can interfere with becoming an independent person and building up their own social network.
Social impact: Carers of people with dementia tend to have smaller social networks than non-carers, and social support often continues to shrink as the condition progresses and caring tasks become more demanding. Often, caregivers need to quit work and reduce their social contacts within and outside the family. Moreover, carers have less opportunities to pursue leisure activities, relax and unwind.
Health impact: Family carers are at risk of developing anxiety, depression as well as feelings of helplessness and isolation. Depressed caregivers report greater subjective burden and more suicidal ideation. Family caregivers also have a higher incidence of obesity, cardiovascular disease, hypertension and sleep problems.
Positive aspects: The caregiving role can have positive aspects. These include spiritual and personal growth, closeness, shared activities, the experience of a reciprocal bond, increased faith, and feelings of accomplishment and mastery. Carers who appraise caregiving tasks as less stressful, find meaning and benefits from the caregiving role, and enjoy more social resources report lower depression and higher life satisfaction.
How to support the family of a person with dementia
Cooperate: Caring for a person with dementia requires a comprehensive plan that includes a liaison between doctors, other health and social professionals and the family. Professionals may ease the caregiving role for a family enormously and may reduce the impact of dementia on a family caregiver.
Provide knowledge and skills: Knowledge and appropriate skills about dementia, particular regarding symptoms, course, and dealing with of difficult behaviours, are essential for effective and sustainable caregiving.
Support: Carers who are particularly vulnerable to negative effects of the caring role should be identified and referred to interventions. Effective interventions for informal carers include psychoeducation, communication skills training, mindfulness-based training, and stress management.
Peter has recently been diagnosed with dementia and is afraid of what happens when he will no longer be able to express his wishes and make decisions. With the help of a social worker he wrote down his preferences in an advance directives document.
Joseph encountered difficulties in his job at the bank because of the problems with attention and working memory. By talking to his supervisor, he managed to move to a quieter and less distracting place, change his working schedule, and later adopt a less demanding position.
Sabine felt overwhelmed by suddenly being the caregiver of her mother. In addition to unpleasant and unfamiliar emotions she struggled with uncertainty and lack of information. Specialists who explained the diagnosis and referred her to a caregiver support group helped her master the difficult situation.
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