Book: Coping and Self-Care

1. Learning Goals

In this book we will:

• Identify and understand ‘what is stress’?
• Learn how to recognise stress in yourself 
• Recognise different coping strategies in yourself and others
• Discuss grief and loss in the context of Later Stage dementia care
• Raise an awareness of the positive experience of caring
• Highlight the significance of supports, both formal and informal

2. Introduction

Living with dementia has many dimensions and everybody has to find their own way of coping. This is true for the person with dementia and for their carers

Many family caregivers find caring a rewarding, fulfilling and positive experience and we will talk about this

Many others find care-giving challenging, stressful and burdensome.

And many find caring both a positive and stressful experience. 

Family carer Martin shares some insights from his time caring for his wife. Take a look at this short video.

3. Carer burden

Several research reports tell us that caring for a person with dementia, requires physical, psychological, social and financial resources for family carers. Carer burden is the single largest factor impacting wellbeing. Particularly, in Later Stages it is all too easy to ignore your own needs when caring for someone with dementia and forget that you matter too

What is carer burden?

Carer burden is defined as the negative reaction to the impact of providing care on the caregiver’s social, occupational, and personal roles and appears to be a precursor to depressive symptoms. The burden of caring can bring ‘stress’.

4. What is stress?

Stress is a feeling of emotional or physical tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous.

Stress is your body's reaction to a challenge or demand. For short periods, stress can be positive, such as when it helps you avoid danger or meet a deadline. But when stress lasts for a long time, it may harm your health.

Apparently most of us only think about the negative sides of stress, things that we believe or perceive to be beyond our control. When we feel we cannot cope with the task in front of us or the situation we are in, we can feel overwhelmed and stressed. Some Carers may feel overwhelmed, tense, irritable, can’t cope, can’t be bothered, tearful, and can’t sleep, have no time, no energy and may smoke, take drugs or may drink more. These may be some of the signs of feeling under pressure of feeling stressed.

But if we believe we can cope, this belief can motivate us into action. Even from a difficult situation we can learn and we can grow. 

We will look at Stress and Coping in the context  of Later Stage Dementia Care.

5. Recognise stress / Identify causes

There may be a number of causes of carer stress, many of which are interlinked

Caring can become stressful if the caregiver has other significant responsibilities; such as a job, children to care for, some distance to travel to care for the person with dementia or when caregiving needs to be 24 hour care, as in Later Stage Dementia. 

Financial issues may cause carers stress. Please see Money Advice and Budgeting Service website for useful information.

Carers may not feel competent in the delivery of their ‘Care Skills’, or may not feel confidence in their Understanding of Dementia.

Changing relationships between the carer and the person with dementia may lead to carer stress

Over time the person with dementia will exhibit changes in cognitive abilities, behavioural and emotional changes and functional abilities. It may be stressful for the carer to see these changes in the person with dementia. The carer may feel emotions of Grief and Loss ? link to ASI Factsheet on Loss & Grief

The carer may experience a loss of identity. Over time the carer’s caregiving role may take over and activities outside of caregiving such as work, leisure and looking after themselves can be forgotten or demoted. Carers may feel a confusing sense of obligation to care, while at the same time feel resentful even angry that they don't have their own independence to live their own lives.

Family dynamics may lead to conflict and strain in family relationships and friendships, (Brodaty and Donkin, 2009).

The need to make decisions on behalf of the person being cared for may be stressful, especially in the case of end of life decisions. For example, decisions relating to the transition to and location of long term care as discussed earlier in Unit 4.

6. Dealing with stress, looking after yourself

For many reasons, some of them mentioned on the previous page, carers may neglect their own self caring. This can have poor health consequences such as physical fatigue, exhaustion or mental health symptoms such as depression or anxiety. If left unchecked, it may lead to chronic stress where the Carers immune system becomes more vulnerable to disease and infections. In turn carers may adopt poor health behaviours such as smoking, drinking, drug taking or poor diet or lack of exercise

Dealing with stress situations can be hard work. To be able to change our situation, we need to feel well in ourselves - we need to look after ourselves. At a basic level, it means

• Eating a well-balanced diet, otherwise, it’s like running a car on empty.
• Good sleep is essential but can be the first thing to go when we’re stressed. This can lead to us feeling even more stressed.
• Dealing with stress when caring, may also mean learning to take some time out each day (to relax and/ or exercise). This respite from caring may give carers the headspace to think positively.

Research shows that when people make small changes, such as above, there can be a big difference to how they feel. We have more energy to face stressful situations.

7. Coping with difficult situations

Throughout our lives, each of us is faced with stressful situations or events that we must deal with, or not. The psychological coping mechanisms that we develop over our lifetime are commonly termed coping strategies or coping skills. Some coping skills are healthy for us, some are not so.

People cope by using some or all of the following:

Distancing: trying not to think about the situation too much, detach yourself.

Self-control: trying to keep your feelings to yourself, carrying on as normal.

Confronted Coping: this is letting your feelings out,  it may be aggressive to the point of being risky and antagonistic.

Seeking social support: asking others for advice, sharing feelings with others.

Accepting responsibility: this is acknowledging your role, you want to make it better.

Escape-avoidance: hoping for miracles, fantasizing, comfort eating, smoking.

Planning, problem solving: making plans to resolve the stress, changing a life style.

Positive reappraisal: reconsidering what really matters, learning from your experiences and growing as a person.

As you can see, some of these coping strategies are more enabling than others.

Some can bring us confidence and bring a sense of control to our lives. For example, Plan full problem solving, Positive Reappraisal and Seeking social support are positive, empowering strategies.

8. A person-centred approach to coping

In practice, people use a combination of coping strategies to help get through stressful situations.  For example some people may use avoidance as a coping strategy when it comes to financial matters but may seek social support when dealing with health care issues.

The challenge for us as carers is to try to respond in a way that helps both ourselves and the person with dementia. The answer may be in thinking about a given situation in a more balanced way and communicating honestly our feelings and emotions. Reflecting on, knowing how we ourselves cope, how others in our families and the person with dementia copes in a given situation may help us.

Last week you will remember we talked a lot about person-centred care and knowing the person with dementia. Being aware of the person with dementia’s coping styles may also provide insight into a given situation. Reducing stress for the person with dementia can also reduce stress for the carer.

9. Taking action

Working on the issues that arise when caregiving, will make you feel better able to cope.

It may help to

• Deal with one problem at a time
• Trying to deal with problems as they arise so that they don’t get worse
• Prioritising what has to be dealt with now and what can wait

Sometimes situations are outside our control, and we may have to accept we can’t change them.

But stress can twist our thoughts so that we can’t think straight, and that makes it more difficult to do something positive to deal with problems

 These questions might help you clarify

·         What’s been helping me to cope so far?

·         Is there another way to think about things? 

For example In Later Stage, many Carers may feel a sense of guilt or failure if they seek, and get, formal care for their family member. This can cause stress. For some carers, having professional staff in their home may make the Carer feel very alone and redundant. Or they may show heightened vigilance over their loved one's care (Grande and Keady 2011).

This can be looked at in a different way. This change may provide more time for the carer to spend reconnecting with his or her own life. And it may provide time to re-establish a relationship with the person with dementia without the pressures of physical care giving. There may be time to sit and have a cuppa, time to look at photos or to listen to music or dance.

·         Who can I ask for help? Who will support me?

10. Caring with support

Connecting with supportive family and friends can help relieve stress. Do remember some family members or friends may not understand dementia or may not be empathetic to the full implications of the caring in Later Stages.

Health Care Professionals (HCP) are key supports to family carers, particularity in Later Stage dementia; people such as Public Health Nurses, your local doctor, a Dementia Advisor, Occupational Therapist, Dietician, and Speech And Language Therapist.

Health Care Professionals (HCPs) and family carers have complementary forms of expertise. HCPs have knowledge of the disease and the anticipated journey of dementia. While you the carer understand the person, what works and what doesn’t in terms of their care preferences and wishes. You can learn from the HCP’s in terms of information, advice and skills to help enrich your caring experience and also to consider the future as far as possible.

Good, clear communication is essential.  Talk to the HCP about your concerns and confirm with them that you understand what is being said. Write down questions for the next time and take notes to help you remember the main points.  Open communication will help you to become empowered in the Later Stages of Care and remain active in decisions. Open communication between everyone leads to person centred care for the person living with dementia and may also facilitate the forming of new relationships. 

Communication with the health care professionals in relation to what is stressful is important too.  It is important that feelings of guilt or sadness, and/ or isolation are acknowledged. HCPs can help with the various transitions that are part of Later Stage and may help with decision making (as discussed in Unit 4).

11. Caring as a positive experience

Researchers have looked at carers needs in the context of relationships. Caring relationships can promote security, continuity, belonging, purpose achievement and significance.

Let us take a look at each of these in turn:

·         Achievement: being a carer develops new skills and abilities and these achievements help carers to feel that they have provided the best possible care,

·         Security: carers expressed their need to feel confident in their knowledge and ability to provide good care while having adequate support networks, especially at times when help is required or needed. Carers also said that they needed to know when it was time to relinquish care,

·         Continuity: even if a person with dementia goes to live in a Nursing Home, carers want to stay involved in their care. Carers know the person with dementia, they know their likes and dislikes, and they know their life story and it is important to convey this to the health care professionals,

·         Belonging: if carers stay involved in care they can maintain and improve relationships and share pleasures with the person with dementia,

·         Significance: caring for someone with dementia helps carers feel appreciated and valued.

12. Grief and Loss

As we know, dementia is a progressive disease and currently, there is no cure for dementia. At times you may feel worried, anxious, resentful and overwhelmed. (It is helpful to remember that the person with dementia may experience these feelings too)  It is common for carers and their families to have feelings of Loss and Grief. 

Adjusting to the changes that dementia brings is a process. It can affect us in many different ways – emotionally, mentally, physically, and spiritually. Sometimes we can feel that we are managing well and at other times we can be surprised that we feel we are not coping. These feelings can include anger, guilt, frustration and resentment. This process of adjustment is similar to that of grieving – except that the person is still with you. Such feelings are a normal part of the process of grieving. But it is important to realise that you may be under a great deal of stress and to seek emotional support for yourself.

It is important to remember that Grief is a natural reaction to a Loss. It is as much a part of your emotions as joy and sadness etc. Grief and grieving is not an illness, it isn’t a task that one must complete. Grief is a process;  it is a complex process and it will take time to adapt. 

There are a number of different dimensions to grief specifically associated with dementia and dementia care.

• In later stage dementia Carers may find that they are grieving the loss of the person that was. More on next page
• As dementia progresses, living with dementia may become more isolating. At a practical level, getting in and out of the car may be difficult; the person with dementia may need assistance with eating, making going out for a coffee or meal difficult.  Demands on the carer's time may become 24 hours and may seem relentless. All this may add to isolation from social support (Neimeyer and Jordan (2002).
• Carers themselves may feel compromised about their ability if they have their own health issues. If the caregiver’s illness becomes more acute, feelings of physical and mental challenges such as depression, isolation, anger and frustration may be common.

13. Anticipatory Grief and Ambiguous Grief

Living with someone who has dementia, grief may be associated with an anticipation of future losses.

Carers (and the person living with dementia) sometimes go through feelings of grief when they think about how dementia might develop and imagine the changes and losses it may cause. Families may have had plans for the future, spoken and unspoken, which will not happen. There will be a loss of independence, a possible reduction of financial earnings, a loss in relationships, a loss of intimacy. These changes may affect the person's physical and mental abilities, relationships and future plans. This is called Anticipatory Grief.

In dementia, the qualities of the person with whom one had a relationship may no longer be present. The person is present physically but they may be emotionally or psychologically absent. This is called Ambiguous Grief.

For Carers, this may lead to a range of feelings and emotions:

Feeling guilty - carers may believe that they misdiagnosed earlier behaviour or had they acted earlier they might have been able to mitigate (make less severe), delay or prevent the behaviour. 

Feelings of Loss- feeling of Loss may not be recognised or validated by others.

Feelings of Anger - at relatives, the feeling that they are unsympathetic, unsupportive, unhelpful and unrealistic, anger at God.

Feelings of Abandonment - by family / friends / God.

Feelings of Resentment - toward the person with dementia.

Fearful of the future – not sure what the future will bring.

As mentioned, feelings of grief can be difficult for yourself and others to recognise and acknowledge. Yet they are a normal response for some people where a family is supporting a person with dementia. Remember: there is no ‘right’ or ‘wrong’ way to feel.

Talk to your GP if you are feeling very low or anxious or if you are very tired and unable to sleep or eat. It is important to try to prevent your normal feelings of sadness slipping in to depression, which is much harder to deal with.

14. What may help?

As we have mentioned, grief is a normal response to a loss. Recognising and acknowledging the losses is important.

What can help…

Accept your feelings. Don’t bottle them up. If you are sad, let yourself be sad. Work through the anger and frustrations. Know that these feelings are normal emotions. Also know that it is common to feel conflicting emotions. Sometimes one can feel caring but resentful at the same time

Know that you may experience feelings of loss more than once. Dementia is a progressive, chronic disease than may have a trajectory of ten years. Know that feelings of grief and loss may come and go again at different stages. This is a normal process.

Know that some people, family and friends may not understand your grief. Most people think that grief only happens when someone dies. They may not know that grief responses may occur for someone who has a chronic, progressive illness, as discussed earlier.

Talk to someone about what you are feeling. Someone you trust to listen can be hugely beneficial. This can be a good friend, a family member or another family living with dementia.

Combating feelings of isolation and loneliness. Carers may give up hobbies, sports or activities when caring for a person with dementia. Taking a break may help relieve the stress. Arrange to meet up with friends, go for a walk or game of soccer. Invite friends over for a chat or phone a friend.

Seek information and Support. In later stage dementia, care can become a 24 hour task. Accessing information about dementia, and supports and services for you and the person with dementia can be a vital step. Accept help if offered. More information on this will be given later on in the course. 

Your own GP can help if you are feeling very low or anxious, or if you are tired. It is important to try to prevent your normal feelings of sadness slipping into depression, which is much harder to deal with. Your own health remains important.

15. Staying Positive

Many carers report positive experiences and times where caring is meaningful and satisfying, such as in Martin's video in the Introduction page to this book, and the research mentioned earlier

These positive emotions provide a buffer against stress and lead to personal growth. Carers who have a positive outlook are more likely to build resources and identify possible solutions to particular predicaments.

By acknowledging  the grief and loss, by developing one’s coping strategies, by seeking out family and friends who can help with practical and emotional support and  gaining information or education support (such as on this course), you the carer are investing in yourself and the person you are caring for. This underpins the role of the carer.

This positivity is important because while carers may feel a great sense of loss, they may find a strong sense of commitment and an extension of their love and obligation to the person for whom they are providing care. (Zarit and Femia 2008).

16. Music may help

Music is universal and can be a really important way to relieve stress.

Music can benefit overall wellbeing; can create relaxation and a sense of happiness for both the person with dementia and the carer.

Research shows that while dementia causes progressive memory loss and impairment, memory for music remains. That means that melodies can often be remembered long after names, faces and words are forgotten. Data indicates that music for dementia patients can boost mood, reduce agitation and improve focus. Best of all, music helps people connect with fond memories, in all stages of dementia including Later Stages

Music can benefit overall wellbeing and create relaxation and a sense of happiness for both the person with dementia and the carer.

You might like to take a look at this short video of an 85 year old lady with dementia as she sings an old song with love and emotion.

17. Case Study

Time is moving on and Tony has been living with Alzheimer's for 10 years. He often wanders around the house, looking in presses, cupboards etc. Often stares out the window, at nothing in particular. His verbal communication skills are very poor. He has recently been more and more agitated and is not sleeping well at night. He is eating less and less. His physical care needs are increasing all the time and this care is still being provided mainly by his wife Maura. 

Having been reviewed by the Psychiatry of Later Life team, Tony has started on new medication which sometimes leaves him very sedate and other times does not seem to work at all.

Maura is feeling stressed, upset and exhausted. She keeps a brave face for Gerald when he phones. There has been some mention of long term care/nursing home care by health care professionals and this is really upsetting Maura.

1. How do you thing Maura is feeling?
2. Could Maura be experiencing grief? Why do you think so?
3. What coping strategies could Maura use to get through this time?

Post your thoughts in the Forum: Unit 5 Case Study please.