Book: Course Summary

1. Unit 1 Introduction Review

The first book looked at terms and definitions we use in later stage dementia care. 

The term later stage dementia care was explored, and we noted that it can be difficult to determine 'late stage'. We suggested we would use the term 'later stage dementia' to describe people who have had dementia for some years. Whereas the term 'end of life stage' is  used to describe the last months and weeks and days of the person with dementia, just before death. 

We then looked at some of the symptoms of later stage, and suggested that people in later stages can have and live with these symptoms for many years. And of course this makes it very difficult for family carers to plan and put things in place for the end of someone's life. 

We talked about person-centred care in a little more detail, and again we looked at the principles of person-centred care which include choice, dignity, empowerment, quality of life, independence and positive well-being.

We then talked about palliative care as an approach to care that improves the quality of life for patients and their families through the prevention and relief of suffering, and the importance of early intervention and treatment of pain. The principles of palliative care are important too and include comfort, love, support, quality of life, relief from pain, person-centred care and life affirmation.

Click on the Book: Introduction to read the full book.

2. Unit 2 Later Stage Symptoms Review

Unit 2 was called Later Stage Symptoms. 

We had two books during Unit 2, one on later stage symptoms, and one for end of life symptoms. We will look at each of these now in turn.

2.1. Later Stage Symptoms

There was a lot in this book! Let us try to summarise some of the main points below.

We talked about memory in later stages, and that people with dementia are likely to have significant memory loss at later stages. This may mean that they cannot recognise those closest to them. However, even though it appears that the person with dementia is not able to recognise someone, they are still likely to experience feelings they associate with that person. 

For that reason, it’s important to continue  to keep communicating with the person with dementia. We showed you the video of Gladys and her reaction to music. We talked about finding a bridge to stored memories and experiences, and in that way we can keep communications open for as long as possible. 

We also emphasised that non-verbal / sensory communication is hugely important - use smell, touch, vision, music, singing, dancing and movement and art with your loved one.

We then touched on mobility issues and symptoms. We mentioned that movement can become more difficult in later stages of dementia. Check other potential contributory factors such as other medical issues or medications, and seek opinion of your GP or public health nurse if bed sores are an issue caused by sitting in the one position for a long time.

We also spoke about hoists to help in mobility and that occupational therapists can provide advice and guidance.

Then, we moved on to eating and drinking symptoms, and we provided some tips on how to improve food and water intake. Toileting and incontinence can be an issue too in later stages for some people. It is important to look at other potential contributory factors to incontinence, and we mentioned a number of these on page 7 of the book. Prompted toileting can help alleviate incontinence. 

We then moved onto personal care in more detail and looked at dressing, providing some tips on page 8.1. Finally, we moved onto changes in behaviour looking at examples on page 9.1 before offering some ways to manage these behaviours on page 9.2. 

See Book: Later Stages Symptoms for full details. 

2.2. End of Life Symptoms

There were also a lot of materials in the end of life symptom management book. Some of you may not be at this stage yet, and you might find it difficult to immerse yourself in this topic. However, as course organisers, we feel it is important to introduce you to these important, though difficult issues in good time. 

So, we looked at some of the signs of end of life stage. In general, these included limited speech, needing a lot of help with everyday tasks, eating and swallowing issues as well as incontinence. In the last days and hours of life symptoms can include loss of consciousness, inability to swallow, becoming agitated and restless, irregular breathing and cold hands and feet. 

At this stage, the focus of care is to maximise comfort for the person with dementia (as per the diagram on page 2) There is less focus on quality of life more on comfort.

Pain may be a consideration at End of Life and the person may not be able to tell you they are in pain. If you are worried, then it is important to contact the GP and/ or PHN.

Delirium was discussed - it can be identifiable as it usually comes on suddenly. Symptoms can include restlessness and agitation, drowsiness and slow responses, disturbed sleep, fear and anxiety and hallucinations. 

It is recommend to seek advice and support from a doctor, public health nurse or other health professional.

You the carer can also help re-orientate the person with dementia (bring them back to the present moment) if they appear to have some of the symptoms of delirium. You can provide visual clues such as clocks to tell the time, newspapers with today's date. 

Agitation may occur in the last few days or hours of life. It may present as restlessness, anguish or confusion. It can manifest itself in calling out or shouting, jerking or twitching. It may be difficult to deal with this agitation. Speaking gently to the person and / or gentle touch may help sooth or calm the person.

Food and hydration was discussed in relation to the end stages of dementia (that is, in the last few months, weeks and days of life). The person's fluid intake tends to decrease slowly over time and the body adjusts to this slowing down.

For more detail on any of the above you can go back and read the full Book: End of Life Symptoms. 

3. Unit 3 Transitions Review

In Unit 3 Transitions and changes in the care journey was examined.

Transitions refer to a shift in the nature of care and may include physical changes to where care takes place and also the psychological shifts you the carer need to make as the care journey continues to pose challenges to you. Transitions also refer to the changing symptoms and stages of dementia that the person you are caring for goes through. 

We mentioned 'advanced care planning' on page 6 and outlined a number of approaches. We also set out a series of questions in relation to advanced care planning for you to consider thinking about and answering (page 7). 

Caring at Home Indicators were highlighted (page 9). You may like to reflect on your answers to these questions now. Do you still feel the same way as you did when you completed these questionnaires earlier in the course?

Finally, we provided you with some things to consider for decision making on page 10. 

You can of course go back and read the full Book: Transitions again if you like.

4. Unit 4 Emotional Well-Being Review

In Unit 4 we looked at emotional well-being for the person with dementia. We looked at how psychosocial needs cover the psychological and social conditions that are important in health and well-being, and include the care environment as well as the person with dementias way of dealing with relationships and social conditions. 

We highlighted the importance of a human rights based approach in dementia care, before moving on to look at Maslow's hierarchy of needs represented in the pyramid. We commented that people with dementia may move up or down the pyramid as their condition changes, and that the pyramid is also valid for carers as their needs change throughout the care journey. 

A person’s identity or 'personhood' was explored in this Unit. This was underpinned by a ‘person-centred care', approach to care, terms which were discussed in Unit 1. 

Especially important here is the notion of 'comfort', especially at the end of life stage. Comfort is defined as a state of physical ease and freedom from pain or constraints. Comfort care is about the idea of 'being with rather than doing for'. 

We spoke about the other six psychological needs outlined by Kitwood. These included love / connectedness / spirituality (not necessarily religious), identity (a person's life story), attachment (the lasting psychological connectedness between human beings) and occupation and inclusion (relationships that treat people with dementia with dignity and respect). 

We then moved onto the end of life phase and looked at the importance of connecting with the dying person. Again, we emphasized the importance of gentle human touch, of scent or smell and the emotions these evoke, of sound especially music and of sight and ensuring the needs of person at end of life stage are met (for example having adequate lighting).

Lastly, it is probable that the person with dementia will be unable to communicate verbally at end of life. There may be limited non- verbal communication. But, you the Carer, know the person well and know many non-verbal cues.

Again, full details in the Book: Emotional Well-Being for the Person with Dementia.

5. Unit 5 Coping and Self-Care Review

Coping and self-care was the subject of unit 5. 

Here we looked at stress. We defined stress as the physical, mental and emotional human response to a particular stimulus - this response can be positive, or perhaps more likely negative. 

We then looked at the link between stress and carer burden. Carer burden was defined as the negative reaction to the impact of providing care on the caregiver's social, occupational and personal roles. 

We then outlined a number of ways you may like to try to manage stress. These included:

• identify causes, these could include the carer's background (culture, income, skill level), changing relationships, loss of identity, family dynamics and increased decision making responsibilities. 
• try to minimise stress by opening up to other family members, close friends or relatives about the challenges you are facing.
• try to take a positive overview, remember the positive aspects of the caring relationship including what you have achieved, the sense of security, continuity and belonging you have provided in caring for the person with dementia. 
• work in partnership with health care professionals - learn to communicate with other people or professionals who are providing care to your loved one. 
•  take action to cope with the care situation you are faced with - here we outlined a number of coping strategies and we advocated that planful problem solving and positive reappraisal as probably being the two most beneficial to you.

We then looked at grief and loss. We suggested that these feelings are particularly complex in the context of dementia. We looked at some examples such as anticipatory grief and the emotions this engenders, and we outlined the importance of positivity and how music therapy can help play a therapeutic role for the person with dementia. 

As ever, you can re-read the full Book: Coping and Self-Care to get the full details. 

6. Unit 6 Communication in Care Review

In this last Unit, communication was the theme, in the context of extended family and professional carers. We emphasized the importance of family dynamics, and how each family's dynamics will have unique characteristics. Family dynamics are important as dementia can affect the wider family as well as immediate family members. Communication is therefore vital to bring families together so that they can deliver the best possible care to the person with dementia. 

This is easier said than done, as of course families are complex. While they are where we belong and feel comfortable, changes that accompany dementia will represent a profound challenge to how most families function. 

To combat tensions, we asked you to consider making a plan together with other family members. Family meetings can provide a purposeful method of identifying solutions to care issues. 

Try to make sure family members understand each other's needs, strengths and weaknesses, and indeed obligations to the care of the person with dementia. Note that family meetings may have to take place regularly to react to changes in circumstances. If possible, try to structure these so that tensions can be addressed and people's views expressed openly. 

We reiterated the importance of the 'comfort-care' palliative approach to ensure quality of later stage dementia care; we emphasized the importance of a human rights approach to decision making, for example in responding to a medical crisis, and that it is vital to make decisions in the best interests of the person with dementia; and we looked at Robert in the video telling us about how he made his decision to move his wife into long-term care. 

We moved on to look at communicating with professional staff, and the importance of open, honest dialogue in which both formal (health care professionals) and informal (family carers) have much to contribute. 

Transitioning to nursing home care was also explored, where we spoke about the need for you and the person you are caring for to feel comfortable with the new care environment. This may take some time to decide on a care location, but this time investment will be worthwhile. 

We mentioned that a gradual, gentle transition may be suitable, and that regular visits will help you become more comfortable and accepting of this significant change. 

Finally, we turned to end of life care and again we mentioned the importance of communicating through 'being with' rather than 'doing for'.

Full details are in the Book: Communication in Care.