Motivation and emotion/Book/2013/Dementia and emotion

Dementia and emotion:
How can the emotional effects of dementia be overcome?

Multimedia presentation (5 min)

Overview

How would you feel if your loved one suddenly didn't know who you were?

Imagine forgetting your point of view half way through a conversation, or being confused about where you are and how you got there. Maybe feeling lost and lonely and not fully understanding why it is you feel that way. Or trying to express emotions of anger and frustration to your loved ones about your confusion and lack of independence, but feeling overlooked and like no one understands you. This is just a taste of what it might feel like to suffer Dementia.

Dementia is a term that covers a number of different disorders that affect the functioning of one's brain. It is usually characterised by a decline in one's cognitive ability, often affecting a person's memory, behaviour and emotion. Sometimes patients with dementia can revert back to past times in their childhood and often become confused and scared. They also find communicating quite frustrating as people don't always understand what they are trying to talk about.

Data from 2010 show that an estimated 35.6 million people suffer with dementia, and that this number is expected to double in the next 20 years (Prince et al., 2013). Unfortunately there is no known cure for this illness, although some studies do suggest that a "use it or lose it" mentality slows down the process of the most common form of dementia, Alzheimer's disease (Prince et al., 2013).

A diagnosis of Dementia greatly effects the emotions of both the person diagnosed as well as the people who have to care for them (Hanson & Clarke, 2013). Co-morbid issues such as depression, loss of independence and loss of empathy create a stressful environment for carers as it often makes patients hard to deal with emotionally. It is important to understand what helps patients to cope better with this diagnosis to ensure the best possible lifestyle for everyone involved. Although a diagnosis may infer future hardships and stressful events, it is important to remember that this is not the end. By working together patients and their carers can still enjoy life and its little quirks to the fullest. It’s important to be patient, remember the good times, and not to forget one's sense of humour!

“

Those with dementia are still people, and they still have stories, and they still have character, and they're all individuals, and they're all unique. And they just need to be interacted with on a human level.

”

— Carey Mulligan, dailymail (2012)

This chapter focuses on:

What are some different types of dementia?
What are the emotional effects dementia has on patients and their carers?
What are the different ways to cope with dementia for patients and carers?
How can you prevent the onset of dementia?

Some types of dementia

Picture of a brain with Alzheimer's disease (top) compared to a healthy brain (bottom)

Alzheimer’s disease

The early stages of Alzheimer's disease typically involve general forgetfulness and difficulty recalling recent events. This is followed by impairments in executive functioning (concentration, planning, memory recall, problem solving and reasoning) as well as other cognitive and behavioural problems. Cognitive problems may include aphasia (spoken and understanding of language), apraxia (loss of motor planning/movement), and agnosia (inability to recognise objects, people, sounds etc.). Behavioural problems may include depression, anxiety, apathy and agitation (Mathias & Burke, 2009). The onset of Alzheimer’s disease is usually slow and tedious, and can take years to be detected. This, as well as Vascular Dementia, are the most common forms of dementia. Mathias and Burke claim that Alzheimer’s disease is caused by a number of issues such as loss of synapses, dysfunction in the dopamine system, and microvacuolation (ischemic damage).

Vascular dementia

Vascular dementia, unlike Alzheimer’s disease, is characterised by a sudden onset of symptoms that fluctuate in intensity (Mathias & Burke, 2009). It is caused by cerebrovascular disease, which is associated with diseases in the blood vessels that are connected to the brain. Examples of these could be hypertension, ischemic stroke and hemorrhage stroke. Ischemic stroke is characterised by blood clots in the brain, whereas hemorrhage strokes are from excessive bleeding in the brain. Usually patients with Vascular Dementia show signs of delusions, depression, and apathy. This is always accompanied by loss of memory as well as two or more cognitive problems (aphasia, apraxia, and agnosia).

Frontotemporal dementia

Frontotemporal dementia is associated with damage to the Frontal and Temporal lobes of the brain, and is unlike the damage that causes Alzheimer’s disease (Johns et al., 2009). The Temporal Lobe is associated with processing sensory input, visual memories, understanding language, emotion, meaning and storing new memories, whereas the Frontal lobe contains dopamine sensitive neurons and is associated with short-term memory, planning and motivation. As well as the other types of dementia, Frontotemporal dementia is categorised by an impairment in one’s memory and daily activities, but also involves early discrepancies with social and interpersonal behaviour (Johns et al., 2009).

Semantic dementia

Semantic dementia is associated with deficits in the anterior temporal lobes (Marques & Charnallet, 2013). This is associated with issues of visual agnosia (inability to recognise visual objects), impaired word comprehension, and anomia (issues with recalling names or words). At late stages of the disease certain aspects of function are still intact, such as non-verbal problem solving, day-to-day memory, working memory and spatial abilities. Patients with Semantic Dementia usually tend to overuse superordinate words when communicating, such as the use of “thing” or “place” instead of the specific item they are unable to name.

Lewy Body dementia

Lewy Body Dementia is characterised by problems with executive functioning, attention and visio-spatial abilities. It will usually include signs of Alzheimer’s disease after further progression (Johns et al., 2009). It includes issues with motor-movement, disturbances in sleep, fluctuating cognitive symptoms (aphasia, apraxia, and agnosia), and hallucinations. Although similar to Frontotemporal Dementia, Lewy Body Dementia is said to be typically more severe and is linked to the neurons in the Limbic System and neocortical regions containing abnormal protein aggregates (Lewy body inclusions). As well as this, Lewy Body Dementia also contains similar pathology to Alzheimer’s disease.

Emotional effects on patients

Dementia can cause stress, sadness and depression on the patient

An initial diagnosis of dementia may leave the patient feeling worried and fearful. Suddenly time seems like it is running out and yet there are so many things to accomplish in life. Dementia can be intense at times, leaving the patient confused and forgetful about significant topics such as the year, who their partner is, and what age they are, although sometimes it may seem that they are completely fine and understand everything.

Imagine a once warm and loving husband who now shows little care and emotion towards his wife. The husband no longer feels excitement, embarrassment or joy like he used to. He becomes confused and agitated easily and quickly forgets what point he was making in conversations. This is an example of what it can be like to live with dementia. Such an extreme change of personality and affect usually leaves patients with dementia feeling lost and scared (Levenson & Miller, 2007). Overall, patients experience discrepancies in their cognition's and emotions, or otherwise known as unmet needs. Levenson and Miller explain that feelings of loneliness, fear, and pain are sometimes portrayed as anger and aggression. Patients also experience difficulties finding words, loss of social skills, issues with understanding others and confusion about their daily schedule. As well as this, they also experience changed friendships due to their condition and therefore lose an amount of social support (Alzheimer’s Australia, 2005). All of these factors can influence challenging and problem behaviour in the patient including:

Verbal aggression - abusive language, yelling etc.
Physical aggression - hitting, punching etc.
Catastrophic reactions to minor criticism
Hoarding - Caused by a response to isolation, keeping past memories, coping with loss or fear.
Repetitive behaviours - asking questions more than once, following you around etc.

Ways to overcome these issues are provided in the Coping with dementia section of this chapter.

Effects on empathy

Studies that have focused on Alzheimer’s disease and Frontotemporal dementia have found that patients show significantly lower amounts of empathy. Empathy is when an individual can experience another person’s thoughts and feelings without actually experiencing their situation, and is an important part of a relationship. Patients with dementia are usually described by their loved ones as unable to understand other people’s feelings when going about their day-to-day life. This shows that dementia can considerably effect a person’s cognitive and emotional processes (Fernandez-Duque, Hodges, Baird & Black, 2010). The patient is therefore unable to experience certain emotions depending on how intense their dementia is.

Depression

Studies have also shown a relationship between dementia and depression (Hanson & Clarke, 2013). Although it is difficult to determine causation, it has been shown that patients with dementia who are more aware of their disorder and difficulties have shown higher rates of hopelessness and despair. After a person is diagnosed with dementia there are possibilities that the negative stigma around the disease may cause fear and low expectations within the patients (Hanson & Clarke, 2013). Hanson and Clarke explain that clinicians need to support and work with patients and their carers during this time, as it is highly emotional for everyone involved (2013). Unfortunately studies have shown that the overall relationship quality between a patient with dementia and their carer tends to deteriorate due to the stress and upset caused by this disease.

Although self-report measures have shown less correlation between dementia and affected emotions, more effective techniques such as acoustic startle and reports from loved-ones has suggested that dementia greatly affects the emotional capacity of the patient. Strauss, Pasupathi and Chatterjee (1993) also explain that dementia can often result in institutionalisation of the patient. Unfamiliar environments can further confuse and upset the patient, causing them to be more agitated and depressed.

Emotional effects of dementia on carers

A diagnosis of dementia will not only emotionally affect the patient themselves, but also their caregivers. People around the patient endure considerable stress and emotional upset due to the loss of empathy and understanding in patients as it has been said to greatly damage their relationship with their significant others (Hanson & Clarke, 2013). Hanson and Clarke claim that family members of dementia patients may experience feelings associated with depression, burden, anger and avoidance.

Caring for someone with this disorder is a dynamic and challenging process (Yeager, Hyer, Hobbs & Coyne, 2010). Yeager and others explain that the feelings associated with depression and burden are more common in carers if the patient is older than 60 years of age and that these feelings increase if the carer themselves are over the age of 60. This would account for a large number of spouses who deal with a significant other who has been diagnosed with dementia (Yeager, Hyer, Hobbs & Coyne, 2010). Yeager et al. (2010) claim that up to 70% of caregivers of older adults with dementia show symptoms of depression, and nearly half of those meet the criteria for a depressive disorder. This can develop in caregivers even if they have not had a prior history of depression in their life. The carers are usually dealing with their own personal issues and health problems, and the experience of a once supportive and emotionally stable network’s loss of empathy and understanding can cause significant negative effects.

Although research has shown an array of negative emotional effects that dementia can have on a patient’s friends, family and caregivers, there is also another side to the story. Caregivers of patients have also been shown to be extremely resilient and positive, especially if they receive support from others (Yeager et al., 2010). This may be from their own friends and family, as well as government initiatives. Some government initiatives provide funding for preventative measures, counselling, help lines, education and training to help reduce the intensity of the effect of the patient’s condition. These avenues of support can cause relief and uplifting emotions while decreasing negative emotions in the patient as well as their friends, family and caregivers (Yeager et al., 2010). Yeager and others claim that it is possible to find help as a caregiver by searching the internet or phone book for organisations in one's area.

Coping with dementia

Respect and understanding can help patients and carers feel happiness and ease (Von Kutzleben et al., 2012)

Many people with this disorder are cared for and live at home. This means that coping strategies need to be in place for the patient dealing with dementia as well as their carers (Von Kutzleben, Schmid, Halek, Holle & Bartholomeyczik, 2012). There are three different stages of dementia (early, middle, and severe) which define the person’s everyday skills and cognitive ability, and also determine what method of coping will be needed. During the early stages of dementia a person will show signs of limited cognitive ability, including forgetfulness, but is still able to live their life independently and therefore causes little to no stress for their carers. People in the middle to severe stage of dementia are a lot more dependent on the help of others during their day-to-day activities.

The patient

There is little research on the success of medications used for dementia. A large number of dementia patients who take medication are known to use acetylcholinesterase inhibitors which inhibits the neurotransmitter Acetylcholine. This type of medication slows the activity in specific neurons that have a known relationship with Alzheimer's disease. Other medication such as anti-psychotic drugs are used on patients with dementia to decrease the amount of aggression and psychosis. Although these medications may improve some of the symptoms of dementia, they can also create side-effects such as nausea, vomiting, decreased heart rate and appetite (acetylcholinesterase inhibitors), as well as motor movement issues and cognitive decline (anti-psychotics) (Von Kutzleben et al., 2012).

antidepressant drug treatment for patients showing a co-morbidity of dementia and depression should be carefully thought out as studies have shown a low success rate (Verhülsdonk & Engel, 2012). Verhülsdonk and Engel claim that although older patients with depression have shown positive outcomes after taking antidepressant medication, patients who have both dementia and depression have not shown the same promising results.These patients with the co-morbidity of depression and dementia also showed increased signs of agitation and tremors after using medication. It is suggested that a successful treatment for dementia can be found in interpersonal contact, support and education more so than pharmaceutical drug treatments (Verhülsdonk & Engel, 2012).

Emotional based therapies such as validation therapy and reminiscence therapy have been shown to successfully help dementia patients. This is because they work to validate the patient's feelings and help them recall past memories to overcome feelings of confusion, fear and lack of energy. Patients with dementia have certain needs which derive from one's personal beliefs, feelings and expectations. Studies have found a number of psychosocial, emotional and practical needs that dementia patients have commonly expressed would help them to cope with their condition (Von Kutzleben, Schmid, Halek, Holle & Bartholomeyczik, 2012).

Table 1 Dementia Patient's Needs (Von Kutzleben et al., 2012)

Needs:	Elaboration:
To come to terms with disease	Acceptance of dementia and support; gain insight into situation;
	being of use/giving meaning to life; confrontation with reality;
	control their own situation
To be cared for	Communication with carers; rating of medication and medical treatment;
	physical care; financial security
Being taken seriously	Not being stigmatized; being treated like an adult;
	comfort and safety within social environment; protection of personal belongings
Maintaining Normality	Hold onto self-concept and identity; sustaining relationships with others;
	continuing to live at home; stay active and enjoy meaningful activities;
	health awareness (independent of dementia diagnosis); autonomy; being useful;
	spirituality and religion
Support	Emotional, Social and Practical; Obtaining assistance;
	continuing information on progress of disease
Coping	Conditions for successful coping; strategies for integration (acceptance);
	strategies for self-protection (avoidance/denial)
Experience with Healthcare System	Access to suitable, individual care;
	Special aids; physical care; financial security

By using observational methods as well as self-report measures, it was found that the needs stated in Table 1 are the main requirements one should address in order to facilitate a healthy transition into dementia. Loss of control, suicidal thoughts, stigmatisation and lack of motivation are some themes that accompany dementia. These themes can cause feelings of confusion, sadness, shame and guilt. Studies have shown that there are a number of personal needs that, if satisfied, will decrease these themes and the accompanied emotions. Patients with dementia need to come to terms with their disease to be able to move on with their life. Maintaining normality will ensure that there is less perceived change in the patient’s life due to their illness, which allows them to go about their normal routines and hobbies. By following these guidelines as well as providing emotional, social and practical support, people with dementia will be able to thrive and have ownership of their own life (Von Kutzleben et al., 2012).

Carers

It is important not to forget your sense of humor during hard times.

Caring for an individual with dementia is difficult because it is a large workload and is usually paired with a loss of independence for the carer. People who care for a family member with dementia usually find it very emotional dealing with their loved ones, as they are often agitated and difficult to handle (Gignac & Gottlieb, 1996). Although there is no real cure for dementia, there are a number of things that one can do to lessen the burden of the disease and cope more effectively as a carer.

It is important to approach a person with dementia in an appropriate way, because this will create a calmer environment. This may include using a calm tone of voice, friendly body language, and being clear and precise in conversations. By promoting a positive tone and using simple and easy to understand questions, this will create a prime environment for the patient to thrive and therefore ensure the nicest possible situation. It is also important that the carer is able to remember the past fondly and in turn these memories make the harder times seem that little bit easier. Teamed with a good sense of humour, these small steps create a more peaceful atmosphere and therefore create less stress for the carer (Gignac & Gottlieb, 1996).

There are also a number of support groups and organisations specifically for carers of dementia patients. Carers can search the internet or phone directory for support services in their community. This allows the carer/family member to talk to other people in their situation to discover new ways of coping. Sometimes knowing someone else is in the same position as you, can do wonders for a person's mental health. Some services even offer adult day care for dementia patients, solely to give carers a break and some time to themselves (Kaskie, Gregory & Van Gilder, 2009).

It is important that carers don't forget to take care of their physical, emotional and spiritual health. Carrying out relaxing day-to-day activities such as reading or listening to music can greatly improve one's psychological health. Table 2 includes some helpful ideas on what to do during times a patient is showing aggressive or repetitive behaviours.

Table 2 Overcoming Emotional Effects of Dementia (National Health Service, 2013)

Behaviour:	Caused by:	How to Overcome Behaviour:
Aggression	Depression, Fear, Humiliation,	Stay calm
	Frustration, Anxiety,	Reassure them of your love and support
	Loss of Judgement, Loss of Self-control	Remember this is not a personal attack but an attempt to communicate feelings
Repetition	Memory Loss, Boredom, Anxiety,	Engage them in activities such as listening to music and physical exercise.
	Side effects of medication	Patient may get lost in once familiar settings so always accompany them on walks.

Preventing dementia

Some variables that effect the onset of dementia cannot be changed such as genetic mutation, family history, age and head trauma. Though there are some risk factors that can be decreased by a number of lifestyles choices. These include:

Regular physical exercise
Healthy diet
Healthy social life
Regular mental stimulation (eg. reading, crosswords etc.)
Manage life areas that cause stress
Get enough sleep

A lifestyle that includes these activities will not ensure a person does not get dementia, but creates an engaged brain which is the best prevention that one can hope to have (Black, Peterson & Feightner, 2001).

Conclusion

There are a lot different causes of dementia that can take many years to unfold. The effects of this disease can greatly affect the patient's emotional capacity, sometimes resulting in depression for both the patients and the carer. Although a difficult issue to deal with, there are many ways to cope. Themes of acceptance, love, understanding and humour allow people to get on with enjoying their lives. By living a healthy physical and mental life one can effectively slow the onset of dementia as well as decrease the severity of the disease. Although sometimes devastating, dementia also allows the portrayal of the strength, love and understanding that people hold in their hearts.

Patients with dementia need support and love

A poem about dementia (Washington State University, 2013)

Do not ask me to remember,

Don't try to make me understand,

Let me rest and know you're with me,

Kiss my cheek and hold my hand.

I'm confused beyond your concept,

I'm sad and sick and lost,

All I know is that I need you,

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry,

I can't help the way I'm acting,

I can't be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don't fail to stand beside me,

Love me 'til my life is gone.

Author Unknown

Quiz - Lets see what you've learned

References

Black, S. E., Patterson, C. & Feightner, J. (2001). Preventing Dementia. The Canadian Journal of Neurological Sciences, 28(1), 56-66.

Coping with dementia behaviour changes. (2013, November 1). Retrieved from the National Health Service web site: http://www.nhs.uk/Conditions/dementia-guide/Pages/dementia-behaviour.aspx

Dementia denial (2012). Retrieved from Daily Mail web site: http://www.dailymail.co.uk/health/article-2147426/Dementia-denial-Two-older-people-worried-don-t-want-know-more.html

Do not ask me to remember. (2013). Retrieved from the Washington State University web site: http://caregiver.wsu.edu/care-of-the-caregiver/words-of-inspiration/do-not-ask-me-to-remember/

Fernandez-Duque, D., Hodges, S. D., Baird, J. A. & Black, S. E. (2010). Empathy in frontotemporal dementia and Alzheimer's disease. Journal of Clinical & Experimental Neuropsychology, 32(3), 289-298. Doi: 10.1080/13803390903002191

Gignac, M. A. M. & Gottlieb, B. H. (1996). Caregivers' appraisals of efficacy in coping with dementia. Psychology and Aging, 11(2), 214-225. Doi: 10.1037/0882-7974.11.2.214

Hanson, C. D. & Clarke, C. (2013). Is expressed emotion related to estimates of ability made by older people with cognitive impairments and their partners? Aging & Mental Health, 17(5), 535-543. Doi: 10.1080/13607863.2013.770447

Johns, E K., Phillips, N. A., Belleville, S., Goupil, D., Babins, L., Kelner, N… Chertkow, H. (2009). Executive functions in frontotemporal dementia and Lewy body dementia. Neuropsychology, 23(6), 765-777. Doi: 10.1037/a0016792

Kaskie, B., Gregory, D., & Van Gilder, R. (2009). Community mental health service use by older adults with dementia. Psychological Services, 6(1), 56-67. Doi: 10.1037/a0014438

Levenson, R. W. & Miller, B. L. (2007). Loss of cells—Loss of self: Frontotemporal lobar degeneration and human emotion. Current Directions in Psychological Science, 16(6), 289-294. Doi: 10.1111/j.1467-8721.2007.00523.x

Marques, F. J., & Charnallet, A. (2013). The role of feature sharedness in the organization of semantic knowledge: Insights from semantic dementia. Neuropsychology, 27(2), 266-274. Doi: 10.1037/a0032058

Mathias, J. L., & Burke, J. (2009). Cognitive functioning in Alzheimer’s and vascular dementia: A meta-analysis. Neuropsychology, 23(4), 411-423. Doi: 10.1037/a0015384

Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer's & Dementia, 9(1), 63-75.

Strauss, M. E., Pasupathi, M., & Chatterjee, A. (1993). Concordance between observers in descriptions of personality change in Alzheimer's disease. Psychology and Aging, 8(4), 475-480. Doi: 10.1037/0882-7974.8.4.475

Verhülsdonk, S. & Engel, S. (2012). Effects of depressive syndromes on the everyday competence of nursing home residents with dementia. The Journal of Gerontopsychology and Geriatric Psychiatry, 25(2), 103-109. Doi: 10.1024/1662-9647/a000059

Von Kutzleben, M., Schmid, W., Halek, M., Holle, B. & Bartholomeyczik, S. (2012). Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging & Mental Health, 16(3), 378-390. Doi: 10.1080/13607863.2011.614594

What is Dementia? (2005). Retrieved from the Alzheimer’s Australia web site: www.alzheimers.org.au

Yeager, C. A., Hyer, L. A., Hobbs, B. & Coyne, A. C. (2010). Alzheimer's disease and vascular dementia: The complex relationship between diagnosis and caregiver burden. Issues in Mental Health Nursing, 31(6), 376-384. Doi: 10.3109/01612840903434589

External links

	Up to 70%
	Up to 60%
	Only 20%
	Up to 90%

	Receive emotional, social and practical support
	Be cared for
	Accept their dementia
	Hold onto self-concept and identity
	All of the above

	Healthy diet, Physical exercise, enough sleep and mental stimulation
	Running until you feel like passing out
	A modern electric stimulation machine that people attach to their heads
	None of the above