Book: Communication in Care

1. Learning Goals

This week we are going to look at the importance of communication in the context of supportive relationships, such as families and healthcare professionals

By the end of the week, we hope you will be more aware of some different techniques for communicating with formal and informal care providers.

2. Support within families

Communication has been studied by many and research says that when we communicate 7% is verbal (what we say); 38% is communicated through the tone of our voice and 55% is non- verbal communication (our facial expressions/ body language / eye contact).

Most of us have created ‘relationships’ from the people in our lives such as our families, friends and partners who are important to us.

Many family members rely on each other for emotional, physical, and sometimes economic support and families are one of the primary sources of relationship security and / or stress. The patterns of interactions among relatives, their roles and relationships are sometimes referred to as Family Dynamics.  

Each family is unique and several factors can influence family dynamics. Secure and supportive family relationships provide love, advice, and care, whereas stressful family relationships are burdened with arguments, constant critical feedback, and onerous demands.  All families have some helpful and unhelpful dynamics, which may change with age and with life events

Speaking about the impact of dementia on family, a person living with dementia says: 

‘One of the things about this (dementia) is - it’s in the family and the family has not only me and my wife, but we have our children and the children have their spouses. In other words this whole thing about Alzheimer’s is not just about two people; it’s about a whole mess of people. Not only our families but our extended families and their friends. It gets very very involved’.

2.1. Families - our role

Most families are complex. Many families have issues that go back many years, and have personal issues that influence the quality of relationships. 

Our role with our families may be fundamental to our sense of who we are and how we fit into our given families and wider society. As each family is unique in its strengths and vulnerabilities, the effect of dementia on each member will be unique. 

For example,  a spouse with a chronic condition may not have been making decisions with regards to his wife who has dementia for many years; a younger daughter living away as a student may feel she needs to escape the family house; an older son trying to keep the family business going may not be aware of the changing needs of his mother; the middle child who has 3 children, one of whom has special needs, knows that her mother’s needs are increasing and knows she must find the time to address it, sometime soon.  

The changes that accompany dementia may represent a profound challenge to how most families function. Tensions among siblings or between parents and their adult children may add considerable stress to the primary carer, and in the end may erode the family’s ability to provide care. Families may argue over whether care is needed, how it should be provided and if people are contributing their fair share (Middleton – Green et al. 2017).

Previous family issues and individual coping styles (discussed in Unit 5) may be a feature of family dynamics.

2.2. Open communication with family

In Later Stages of dementia, the person will need the support and care of their family. The more people participating in care, the less alone the main Carer will feel. Family meetings are a way to facilitate this process.

Each family is different. When planning a family meeting, it is important to include everyone who is or will be part of the caregiving team. This may be the person’s spouse, adult children including sons and daughters in law, grandchildren, long standing friends of the person with dementia, neighbours or paid caregivers.

A decision must also be made about whether or not to include the person with dementia. It might be a consideration to hold at least the first meeting without him/her present.

Family Meetings/ Some points 

• All family members need information to help understand dementia. Part of that is an understanding that the person with dementia's needs will change over time. They will become more dependent. Because of the complex nature of dementia, more than one person needs to be involved in care.
• Everyone can play a part –
• Some family members may be more practical and look at the laundry or cleaning or cooking, if these are issues
• Others may be in a position to help with ‘driving’ – either socially or to appointments
• Some may be in a position to help out in financial matters
• Some may like to chat , tell the local news
• Hold regular family meetings – perhaps once a month, even when there is no ‘issue’ to discuss. Staying connected in the good times will build up relationship for when there are more difficult times
• Accept it is normal for families to have differences of opinion. Dealing with dementia can bring out many strong emotions for some
• Family roles will affect each person’s perspectives on dementia. Person with dementia/ spouse / partner may have different perspective on care planning than a son / daughter/ or aunt or uncle / grandchild
• Do remember that family commitments may vary.
• Listen to each family member with respect.

Open and honest communication is beneficial for everyone.

2.3. Family Meetings - some helpful points

Open and honest communication is beneficial for everyone but some family members may have difficulty expressing their thoughts, feelings and emotions; they may not understand dementia and may not have learned about dementia. They may feel sadness, confusion, anger, guilt or shame. They may be fearful about death and dying, about being overwhelmed, about what will happen. They may be questioning what does the person with dementia want and need?

It is helpful for family members to learn to use the word “I”. To say “I need...” rather than “You should...”. The aim of the meeting is to find a way of caring for the person who has dementia, even if there is conflict among family members in other areas.

At the end of the meeting, make sure everyone has a clear understanding of what was discussed. Make sure that each person understands what he/she has agreed to do.

In Later Stages meetings need to take place regularly, there may be more ‘issues’ to discuss. Having regular meetings puts less pressure on family members to get everything resolved in just one meeting. It allows more time to process information and decision-making. When a family member is unable to attend a meeting, keep in touch by phone, text, email, Zoom or WhatsApp.

2.4. Family Meetings: Support

Open and honest communication is ideal.  All families have a history and sometimes this history may make family meetings difficult. A third party facilitator can be helpful.

Dementia Advisers may be able to help. ASI has a number of Dementia Advisers who work with people with dementia and their families to provide individualised and responsive information, sign-posting and emotional support service. This service is free and confidential.

In relation to family meetings, the Dementia Adviser

·         Avoids focusing on old conflicts and instead directs the conversation to what can be done to help both the person with dementia and his/her carers. 

·         Solutions emerge from the family who will come up with a plan for helping, once they have a better understanding of the carer's needs.

·         Topics may include care planning, help with decision making, long-term care information, information and advice about the financial implications of caring. 

Family meetings can help identify difficulties and help find solutions.

3. Challenges in Later Stage Dementia care

Later Stage dementia care can bring changes for many Carers. These may include:

• Grappling with the definition of quality of life and communicating for the person with dementia
• An awareness that various medical crises may arise
• Considering the location of care in the Later Stages of Dementia (also see Unit 3 – Transitions in Later Stage Dementia Care)

Acknowledging the impact that caring for a person with dementia has had on your life (see Unit 5 - Coping and Self Care).

3.1. Communication - the palliative approach

In Later Stage dementia the person with dementia may have limited verbal communication. People with dementia often communicate their needs and feelings through non-verbal means – body language, gestures and facial expressions and behaviour.

·         It’s important to remember that you know the person you are caring for. You know when he/ she are comfortable and happy. You know this from the non-verbal signs of communication such as relaxed muscle tone, smiling, or eye contact. The person is communicating with you, you are connecting with him/her

·         Emotions and feelings stay fairly intact in the person with dementia. In Later Stages people continue to feel the whole array of emotions: happiness, sadness, joy, grief, and so on. What changes is the amount of control they have on the expression of their emotions. You can assist the person with their emotions. The person with dementia, particularly late in the disease, lives in the moment, without a perceived past or future. If you help them enjoy the moment, communication is a gift of positive emotions (Ghent-Fuller, 2003).

·         Try to maintain eye contact with the person.

·         Think about your non-verbal communication; body language and tone of voice. Touch and human contact are important. Sitting with the person, talking to them, brushing their hair and holding hands may help. As discussed in Unit 2 Symptoms in Later Stage.

·         A calm and familiar environment is usually best for a person with dementia at the end of their life. Stimulating the senses, for example with music and aromas the person likes, can also help. The focus should be on making sure the person is as comfortable as possible.

·         Take your time and take cues from the person. Maybe locate their bed near a window for natural sunlight or so that they can hear the sounds of nature.

Use what you know about the person to engage them. This could include hobbies and interests from their past. It can help to make use of a range of resources such as photos, objects and memorabilia. The most important thing is to engage with the person – talk to them, make use of the senses (touch, music, smells) and use what you know about them.

3.2. Responding to medical crises

As dementia progresses, there is an awareness that medical crises may arise. People with dementia are not always able to participate in meaningful discussions and in the absence of advanced care planning, Carers become proxy decision makers. Anticipating needs and looking ahead may lead to greater resolutions in times of crisis

A dementia related crisis is when there ‘is a stressor(s) that causes an imbalance. It needs an immediate decision which to resolve the crisis. If the crisis is not resolved, the cycle continues’, Vrooman, et al (2013).

It is beyond the scope of this course to identify all possible crises but in Later Stage dementia it may include

·         Acute medical conditions such as fainting and collapse, pneumonia, urinary tract infections, and dehydration and malnutrition.

·         Falls and hip fractures are associated with emergency hospitalization and nursing home placement in persons with dementia

·         Behavioural and psychological symptoms of dementia are ‘stressors’ which lead to crisis situations 

Acknowledging and anticipating that these ‘crises’ will probably occur is an important step. Advance communication with General Practitioners and PHN is a key point. They can offer information, expertise and support about dementia and the Later Stages

·         They can give information on respite care and home support services. Without such services the crisis may lead to over-burdened caregivers and to unplanned institutionalization or emergency hospital admission

·         Carers can reflect about how they are feeling; in regard to their caring role and also about their own health, how they themselves are managing.

Decisions about the care of people with Later Stage dementia should be through consensus among healthcare professionals and family carers, with considerations of the persons known or perceived wishes, beliefs and values, as discussed in Unit 3.

3.3. Considering the location of care

The decision to move to a new place of care is not made easily, as discussed in Unit 3. For many Carers it is a decision about doing the right thing for the person they are caring for and for themselves. Take a look at Robert speaking about the decision about long term care.

 

 

The decision to place someone in long-term care is not made easily. It is also not unusual for caregivers to be indecisive. A decision like this takes a long time to process; one minute the carer thinks he/she is able to cope, the next he/ she finds the whole situation is way beyond him/her.  The Home Care Indicators as discussed in Unit 3 may help arrange or consolidate your thoughts.

As mentioned previously, support and information is important. The Public Health Nurse, GP, Citizen’s Information, Age Action, Family Carers Ireland and HSE website may be of assistance.

If you decide to investigate residential care homes - be sure to do your research. You might be interested in this document.

Finding a Suitable Nursing Home for a Relative with Dementia: A Guide for Family Caregivers to Placing a Relative with Dementia in a Nursing Home Available here.

4. Case Study

We all know Tony by now. He and Maura have been living with Alzheimer's for 10 years. He spends a few hours resting in a Recliner chair, dozing and gazing out into the garden. He does wander out to the garden at times. In the last few weeks, he has fallen twice while been assisted to the bathroom by Maura. Maura needed to call her neighbour next door to help get Tony up from the floor. Visits to the GP confirmed no broken bones. The Public Health Nurse is talking about a hoist to assist with transferring.

Tony’s son Gerald is home from America. He was unaware of the deterioration in his dad and gives the ultimatum that ‘it’s time that Dad goes into a Nursing home’. He asks ‘How many times does Dad have to fall to realise that you cannot do this anymore? ‘. Gerald thinks that his mother is at the limits of her ability to care for his Father at home.

Maura’s heart is broken.  She cannot think straight. She is exhausted. She knows she isn’t coping well. She hasn’t told anyone that some years ago, both Tony and herself discussed going into a Nursing Home. They promised each other that they would look after each other in their own home.

1. What do you think of Gerald’s approach?
2. In what way could Gerald communicate better with Maura?
3. Do you think that Gerald should have a meeting about Tony’s care? Who could or should attend this meeting?
4. Do you think this would help Maura? In what way?

Consider Tony's situation and the questions posed, and post up your thoughts to the Forum: Unit 6 Case Study.

5. Communicating with professional staff

The essence of this course is the promotion of person centred care for the person with dementia using a palliative care approach. A palliative care approach involves both the person and their families throughout the journey of the disease.

Also, as the dementia progresses, it is more than likely that Carers will need more input from the Health Care team. The Health Care team can include: Public Health Nurse (PHN), GP, Dementia Advisor, Day Care Team, Home Helps, Occupational Health Professional, Physiotherapists, Social Workers, Dieticians, Speech and Language Therapists and Nursing Home Directors & their Staff. 

This requires ongoing communication. Open, honest communication with the Health Care team can improve the carers understanding of the dementia journey and provide information on the burdens and benefits of medical treatments.

It is important to say that the Carer and the Health Care team can be seen to have differing but complementary forms of expertise. The Carer having the understanding of the person with dementia and what it is to live with the disease and the Health care team having professional, clinical skills underlined by knowledge of the disease trajectory. Working in partnership help builds relationships of trust, and facilitates a sense of care support. 

In situations where values are not shared, difficult conflicts can arise between Health Care team and families or between family members, resulting in negative emotions for families such as guilt, fear and anger. These may impact on the Care given and on the grieving process for the Carer. It is important to try to resolve any conflicting issues with open communication, meetings with all members may be helpful.

6. Communicating with Nursing Homes

If the person with dementia moves to a Nursing Home, it is important to build up a communication relationship with the Director and Staff.

The dynamics of care now has 3 dimensions, the person with dementia, the Carer (family and friends) and the Nursing Care staff. It may be that the person with dementia has stayed there for Respite and therefore the transition may be a little easier.

Settling in and feeling relaxed, transitioning, will take some time. Time invested in planning the transfer and talking with the staff will be time worth it. Before the move, staff should have a sense of the person coming. Most homes ask for / write down the person’s life history/ story. It is called This Is Me or Key to Me. Also, a detailed description of the person’s daily routine is helpful, so that it can be matched by the Nursing Home.  Familiar photos (that have the people’s names/ places written underneath) can prompt staff to talk with the new resident. A CD with familiar music can help ease stress.  

A book titled Contented Dementia, advocates for a gentle approach to the transition (James, 2008). The author suggests that for 3 consecutive days, the person with dementia goes to the nursing home with his carer. There he meets a friend or family member who is already there having tea. This family member invites them to join him for a cuppa. They stay an hour or so. During this time, the Carer and the friend are watchful for what the person with dementia is feeling/ wondering and communicating, even in a non-verbal way. The Carer and person with dementia goes home leaving the friend there. The idea is that potential problems may be identified and addressed e.g. people walking around, bells sounding etc. It also promotes feelings of warmth, relaxation and friendliness.

Regular visits will help you become comfortable with the transition. Acknowledging ones feelings, including any feeling of loss may help. Talking with the staff, about things that are really working out, as well as discussing problem issues with help build up relations. Open communication can reassure you that your loved one is being well looked after.

7. End of Life Care for the person with dementia

We know that dementia is a progressive, terminal disease.  We know that Palliative Care is an approach that emphasizes comfort. This can be given in the person's own home or a nursing home, a hospital or hospice (if available).

Wherever the place of end of life, the emphasis is on ‘being with’ rather than ‘doing for’.

By the time the end of life comes, most Carers of the person with dementia will have been involved for many years.

Whether the person dies at home, in a hospital, hospice or Nursing Home, Carers should take pride in the many ways they have made the person’s life better. It should be reassuring to know that it was they, the Carer that allowed the person’s identity to be visible throughout his life.

Bereavement: After a person with dementia dies, remember, it will take time to adjust to your loss. There are no rules for grieving – we all react to the losses in our life in our own way. Whatever your reaction to the death, you will deal with it in your own way and in your own time.

8. Key Points to remember

The role of family is critical in the care of persons with dementia

Not only do people with dementia need assistance with daily tasks but because of the progression of their cognitive impairment they also require that someone looks out for their best interests, in everyday decisions, medical care or financial management. 

Caregiving may be stressful and is multidimensional. Caregiving may be given in the context of family dynamics, family issues and tensions including economic issues.

Carers should not be encouraged to act or feel in a certain way because of expectations. Family meetings can help identify solutions and provide care planning. They can be conducted within practical and human rights based frameworks

In later stage dementia, partnerships with the Health Care team become more important. Health Care teams can provide support, give information and help the family to stay connected to the person with dementia. 

Trusting relationships can develop and Health Care Professionals can help to make informed decisions within a legal and ethical context. They can help carers build on their strengths, develop skills and adjust to the changing demands of caregiving. 

This in turn could help the family achieve greater psychological and physical resilience when faced with end of life period of their loved on and in their bereavement.