# Motivation and emotion/Book/2013/Caregiving and grief in dementia

* Multimedia presentation (5 min)

## Overview

Imagine that you have just got up in the morning. You can smell breakfast being cooked. You go into the kitchen and see your mother at the stove just like you used to when you were young. Now imagine the emotions you may feel when she turns to look at you, there is a look of confusion on her face and she asks ‘Who are you?’.
Some of the emotions that you feel at this may be along the lines of sadness. To someone who is a caregiver to a patient with dementia this and other scenarios like it are very common. Caregivers feel a range of emotions, including depression, sadness, grief, and after the patient has passed away they can even feel relief that it is over. You might ask how caring for someone with dementia is different to caring for someone who has a terminal illness. Well, for these caregivers they are essentially watching two deaths, the death of the mind then the death of the body. And it can take up to 20 years before the patient dies.
Grief is described as a reaction to the loss of something. It is most often associated with the loss of a loved one. At some point in your life you will experience grief. Everyone experiences grief in different ways (Howarth, 2011). Some may experience great sadness and feelings of depression. Others may feel relief that their loved ones pain is over. There have been many theories relating to the experience of grief and how we deal with it. The Kubler-Ross Model is one of the most famous and follows a series of stages that a person goes though during the grieving process. This model demonstrates that there can be many emotions associated with grief, including sadness, depression and in some cases relief.
Anticipatory grief (AG) is a type of grief that many caregivers experience. This grief involves the emotions that are felt when caring for a loved one before they die. Many studies have been conducted on how caregivers experience AG and how it is different to normal grief. One study found that there was a range of emotions and reactions that caregivers felt during the course of caring for their loved one (Meuser & Marwit, 2001).
It has only been in the last two decades that the issue of grief among caregivers of dementia patients has really been noticed. The earliest paper that noted that the grief they experience is different was written in the 1980’s.[factual?] Some of the research has found differences in the grief experienced depending on the relationship between the caregiver and the patient (child and parent, spouses) and the stage that the patient is at. Support is available for caregivers, and much of it based around research into the feelings of grief.

## What is dementia

Dementia is a degenerative cognitive disorder that effects a person’s cognitive abilities, most often their memory, and leads to death. The decline of cognition is gradual at the beginning (forgetting how to get from work to home) then increases until the patient looses most of their cognitive functioning (they can recall very little of their life and cannot form new memories at all). Dementia is most common among the elderly, with average age of onset being 65. While dementia is most common among the elderly and is often thought of as being a normal part of aging, it is not a normal part of ageing, it can affect anyone over the age of 40 (it is considered early onset if the symptoms present before age 65).
It is important to note that dementia is not actually a disorder, but is a symptom of other disorders such as Alzheimer’s. The cause and symptoms presented depend on the type of disease. Very little is known about the causes of dementia, though it is known that it affects the plasticity of the brain causing the decline of cognitive function. There is very little evidence to suggest that dementia is genetic, but it is believed that as the population ages dementia will become more common. Alcohol and brain damage are a few of the only known causes. Excessive alcohol use has been linked to dementia (such as Wernicke-Korsakoff Syndrome). In these cases the dementia is caused by lack of vitamins and minerals to the brain. Brain damage is also linked to dementia as certain parts of the brain can be damaged causing a decline in cognition.
There is very little that can be done to treat dementia, most of the treatments focus on treating symptoms. Treatment often focuses on keeping the cognition up until it is really gone. Medications have been used to manage the pain and other associated problems that the disease causes. There are very few preventative methods at the moment, however there are some activities that have proven useful to delay onset.

### Common types of dementia

Some people believe that dementia is a normal part of aging but it is not. In fact dementia is a symptom of other diseases. Below are only a few of the different types of diseases in which dementia is a part of.
* Alzheimer's disease
* Alzheimer's disease is the most common dementia-related disease, and the most progressive. The early symptoms are problems remembering events and places, in the late stages there is confusion, aggression, irritability, mood swings, memory loss and problems with language. As the disease progresses eventually the patient looses body functioning, which leads to death. Alzheimer's is very hard to detect in the early stages as the symptoms mirror normal aging. Onset is usually around 65 years[factual?], however early onset can occur earlier. At this time there is no cure or prevention for Alzheimer's.[factual?]
* Vascular dementia
* Vascular dementia is caused by problems with the supply of blood to the brain, mostly caused by minor strokes. It is the second most common form of dementia, Alzheimer's being the first.[factual?] Vascular lesions, sometimes the result of cerebrovascular disease, cause a decline in memory functioning and some other cognitive functioning. They may also experience delusions and depression. Early detection is very important as this type is in part preventable. It is easier to detect than Alzheimer's as the onset is much quicker, almost sudden. Treatment includes stopping any further lesions.
* Semantic dementia
* Semantic dementia is characterised by loss of verbal and non verbal skills. It is one of the fairly common forms of dementia. The main symptom is difficulty understanding word meanings, inability to recognise objects and difficulty remembering names. As it progresses the patient can experience personality and behavioural changes. Although in the later stages some functioning can in some cases still be fairly intact, such as working memory.

## Caregivers and their grief

Because of the nature of dementia caregivers essentially experience two deaths, the death of the persons mind and then the death of the body. This can be very hard on them as this process can take decades before it ends. Some studies suggest that there is a link between grief and depression (Walker & Pomeroy,1996), though each should be treated separately as they are two different emotions. Most carers of dementia patients are initially family members (children or spouse), and it is not until the later stages of the disease that the patient will enter aged care. Most research conducted on grief among caregivers focuses on the impact on family members.

### Family caregivers

Family caregivers tend to experience higher levels of grief then do aged care workers.[factual?] This is mostly because of their relationship to the patient. Most patients are cared for by their family members, most often their children or spouse. A study by Meuser and Marwit (2001) found that were very large differences in the type of grief that caregivers felt depending on the type of relationship they had to the patient and the stage they were at. From this research they developed the MM-CGI (Marwit-Meuser Caregiver Grief Inventory). This inventory is used to assess the level of grief that carers experience while caring for their loved one. Their initial research found that there were very different experiences between different carers and the level of their relationship, such as a child caring for their parent or spouses (see Table 1). Adult-Child caregivers' grief was more internal, they thought more about what they were loosing, whilst spouses' grief was more focused on the loss of what was.[factual?]
Table 1. Summary of grief characteristics by Meuser and Marwit (2001)
| Clinical Dementia Rating | Adult-Child | Spouse |
| Mild | Denial, fear of the future, helplessness, anger, jealousy towards others, mainly avoiding the issue | Focused on reality, openly sad, acceptance, lack of denial, |
| Moderate | Frustration, anger, guilt, pining, sadness for what was, grief is about self, beginning of anticipatory grief, isolation form others | Sadness, mild frustration, trying to maintain relationship, aloneness, thoughts of nursing home placement, anticipatory grief, believing that death will bring relief |
| Severe | Parent in nursing home, regret, guilt at not caring for them, sadness, longing, loneliness, grief at highest | Burden of care eased (nursing home), loss of identity as a couple, creating a new identity, confusion about future, frustration, aloneness, grief expressed as bitterness and sadness |
| Deceased | Sense of relief, grief returns over time | High levels of grief still felt, sense of relief |
Marwit and Meuser (2002) went on to create what is known as the MM-CGI. This is an inventory that is used to assess the type of grief and other related emotions that caregivers can experience. Their study identified three factors on which their inventory is based. Many studies focusing on grief use this inventory to assess the levels of grief that caregivers feel. The three factors are: Personal sacrifice and burden; heartfelt sadness and longing; and worry and felt isolation. The first factor (personal sacrifice and burden) focuses on the caregiver role and the losses they have felt at taking on the role. At some point during the caring process the caregiver will feel regret and grief at the loss of the life they lived before becoming a carer and the loss of the relationship between them (Meuser & Marwit, 2001; Sanders, Ott, Kelber & Noonan, 2008). The second factor (heartfelt sadness and longing) focused on the intrapersonal emotions felt. This means that the carers is grieving for what once was (the past), feeling powerless and not wanting to accept their reality. The third factor (worry and felt isolation) is about losing connections between other family and friends. Many caregivers report that they lose friends when they become carers as they are often not able to socialise with others (Meuser & Marwit, 2001).

### Anticipatory grief

Anticipatory grief (AG) is felt in anticipation to the loss of someone. Many carers feel AG during the process of caring for their family. As carers of dementia patients are left to watch two deaths, the first of which can take decades to end, they can feel grief over loss of life before the life even ends. This is what makes it different to 'regular' grief, the person whom they are grieving has yet to die and can span the entire length of the disease. Many studies on carers of dementia patients have a focus on AG being a part of the caring process (Meuser & Marwit, 2001; Walker & Pomeroy, 1996; Sanders, Ott, Kelber & Noonan, 2008). One thing that many of these studies have in common is that AG lasts longer than does normal grief, mostly because they have longer to grieve.
Holley and Mast (2010) attempted to find a way to predict AG in caregivers of family members. They found that the behavior of the caregiver was a better indication of the level of AG that the caregiver experienced, not things like the stress of caring. This is a very interesting idea as many carers can experience some very stressful situations. The study not only focused on predictors of AG, but also the main types of grief experienced by carers. Some of the top experiences are loss of relationship and the loss of communication between themselves and the patient.

## Support

Many caregivers seek support to help them deal with the emotional burden of caring for their family member. Most carers attend support groups (Walker & Pomeroy, 1996) that help them talk through their feelings and can help them deal with isolation as these groups are full of people who are in a similar situation to them. Most find support from aged care facilities (these offer respite care) and they can also get in contact with support groups that can help them through this time. From research conducted[factual?] there are three main types of support available: the 3-A model of intervention, respite care and nursing homes. Many of these methods have be found to reduce caregiver grief or at least allow the caregiver to better manage their grief (Brodaty, Green, & Koschera, 2003).

### Nursing home

During the severe stage of dementia, many family carers place their patient into a nursing home. This happens mostly because the carer can no longer handle caring for the patient. This is a very important decision for there are many different emotions that the carer has to deal with but, by the time the suffer is at this stage, they need the care that nursing homes provide. Carers often feel a range of emotions when it comes to making the decision to place their family into a nursing home. Many feel regret at the choice, in some cases they feel they have broken a promise to the person (Cairns, 2012). Many caregivers visit very regularly (sometimes everyday) because of the guilt they feel, often wondering if there was more they could do.

### Respite

Respite care is the most common form of support for family carers. Respite gives the primary caregiver a break from care in the short-term. Almost all caregivers use respite care on a regular bases (O'Connell, Hawkins, Ostaszkiewicz, & Millar, 2012). There are many benefits of respite care for the carer. The most effective benefit is that the carer is given a period of time in which he/she is free form the stress of caring for someone with dementia causes. It can also give them a break from the grief they experience by being in contact with their loved one.
Many aged care facilities offer some kind of respite care for caregivers and in some countries the government offers programs to aid in respite care (O'Connell, Hawkins, Ostaszkiewicz, & Millar, 2012).

### 3-A model

Sometimes caregivers need a little more support in dealing with their emotions that respite care can provide. Silverberg (2007a) proposed a intervention program, 3-A. The three A's are Acknowledge, Assess and Assist. She found that this model was very good on an individual bases, meaning that it can be tailored to suit the needs of the caregiver. It has been proposed that this model can be used to prevent other problems from arising such as depression, which can become a problem among caregivers (Silverberg, 2007b).
Acknowledge refers to the acknowledgement of loss and grief. What it means by loss is to acknowledge the loss of the relationship that once was. Silverberg (2007a) also mentioned the acknowledgement of the loss of freedom that accompanies the caregiver role, as there comes a point when the patient needs 24-hour care. The carer must also acknowledge the grief he/she feels at the loss of life he/she is slowly witnessing. Assess refers to the need to assess the caregiver grieving style, are they letting their grief out or are they keeping it in.[grammar?] It is in this section that the previous theories of grieving come in. When assessing the grieving style are they loosely following a major theory and how much is it changing.[grammar?] Silverberg (2007a) noted that the theories of grieving are not always linear (they do not follow a set pattern) and that everyone grieves in their own way. Assist means to help the caregiver deal with their grief and the burden of caring for their patient. This is where things like respite and nursing homes come in. It can also refer to the need to treat any emotional issues that have arisen, such as depression.
* Conclusion
* Grief is a common emotion to feel after the death of a loved one , for caregivers of dementia patients the feelings of grief can last for a very long time.[grammar?] One thing that stands out as being different to regular grief is that the caregiver often feels grief before the person is dead. This is because the caregiver is essentially watching two deaths, the death of the mind and the death of the body. Research has really only just begun understanding anticipatory grief and how it affects caregivers. There are inventories that have been developed to asses the level of grief the carer is feeling. There is support available and many of the programs that have been developed are based on the research conducted. These support programs have been very useful in helping the caregivers deal with their grief and helping them better care for their loved one.

## Quiz

Let's see what you've learnt. Complete the following as best as you can without looking up the answers: