Book: Transitions

1. Learning Goals

This week we are going to:

Outline the key points of transition a person with dementia may undergo as they approach end of life

Consider the implications of caring for someone at home

Consider ways in which dying can be planned for in advance

Think about a range of issues to consider when making decisions related to the care of a person with dementia.

2. Introduction to transitions

A transition in later stage dementia care may refer to a shift in the nature of care, and may include a change in location or place of care.

It can be very difficult to determine the exact stage the person with dementia is in, and a key challenge is identifying the point at which someone living with dementia begins to die from dementia. 

As mentioned earlier a palliative care approach should begin when dementia is diagnosed. That aside, the main concerns in later stage dementia is that of the physiological, spiritual, psychological and social needs of the person with dementia and their family. 

Watch the short video in which family carer Sean Donal O'Shea talks about caring for his mother who has dementia. 

3. Transitions in later stage

In Later Stage Dementia, caring can turn into 24 hour care.  Carers need to take over tasks such as washing, feeding, toileting and dressing.

This Later Stage can centre around three key points of transition

·         loss of mental capacity

·         loss of ability to eat

·         loss of ability to mobilise

Transitions that may indicate late stage include:

1.       No meaningful verbal communication, stereotypical phrases only or the ability to speak is limited to 6 or fewer intelligible words 

2.       Difficulty swallowing or eating

3.       Unable to move about without assistance. For example, unable to dress without assistance and / or unable to bathe without assistance

4.       Urinary and faecal incontinence,  which could be intermittent or constant

In addition the person with dementia may have the following in the last 12 months:

1.       Aspiration pneumonia (inhaling food/liquid into lungs), kidney infections or other upper respiratory tract infections, septicaemia (poisoning of blood stream) and/ or pressure ulcers

2.       Fever which can reoccur after antibiotics

3.       Dehydration and low calorie intake, this results in weight loss (10% of body weight in 6 months)

People with dementia may not able to participate in discussions about their care and in the absence of an Advanced Care Plan, the Carer becomes the proxy decision maker.

4. Dementia as a terminal illness

A fact of life is that we will all die at some time. Some of us will die suddenly, some of us will die from a cancer or a chronic respiratory disease. People with dementia may also die in such ways, but many die from the complications of advanced dementia, following multiple infections, aspiration of food or fluids or following a fall. 

‘The last 2 to 3 years being most difficult for the person with dementia and their loved ones (Richard Taylor, Person with dementia).

The late Dr. Richard Taylor a founding member of Dementia Alliance International (DAI) impacted the lives of thousands of people around the world. Read more about him here. 

5. Planning in later stage dementia

The unique experience of dementia makes it difficult to have a standardized approach and this includes planning.

Planning for end of life care is challenging. But it is important to talk about, and document, preferences.

The process will include different perspectives from the person with dementia, family carers, other family and health care professionals.

The family's perspective might include grief, anxiety, guilt, financial difficulties, legalities and other challenges. But the benefits include peace of mind, communication and person centered care, and honouring the person with dementias wishes and personhood.

6. Advanced Care Planning

Advanced care planning allows us to plan ahead to make sure that our right to make decisions for ourselves is honoured. In dementia care this is important and should be done in the early stages when the person with dementia can voice their opinion. 

Advanced care planning in dementia is particularity challenging as the person may not be able to consider or imagine the future and families may not be able to predict wishes and decisions.

There are a number of potential different approaches to advanced care planning. These include:

Informal Advance statement: written or verbal expression of wishes and choices about care at end of life. They are not legally binding. Please see Think Ahead' (Irish Hospice Foundation) and 'How Do I Plan for the Future?' (The Alzheimer Society of Ireland). This can be done at home.

Advance Decision to Refuse Treatment / Advance Health Directives: written documents stating in advance what health care interventions an individual does not want in the future. They only come into force if people are unable to talk for themselves, and is applicable to the decision being made at the time. This discussion is done with a solicitor.

Lasting Power of Attorney/ Enduring Power of Attorney: formal appointment of a surrogate decision maker who must be consulted about two types of decisions – Health and Welfare (only comes into force if people are unable to say themselves what they want at the time) and Property and Affairs (comes into force any time that the individual authorizes them). This legal document is completed with the person with dementia’s solicitor.

Do Not Attempt Cardiopulmonary Resuscitation: a medical decision not to attempt resuscitation if the attempt is felt to be medically futile or not in the person's wishes, as in a documented Do Not Resuscitate. This discussion is conducted with the person with dementias GP.

7. What to discuss in advanced care planning

These are questions to be discussed with your loved one with regard to Advanced Care Planning.  

What if….

• you become more ill, where do you want to be cared for?

• you become unable to safely swallow food – would you want to be fed with a tube into your stomach?

• you develop an infection – would you like to be admitted to hospital for treatment or would you prefer treatment in your home or Long Term Care?

What do you think…..

• about what we need to do if you become unwell?

• about what your family or friends might want to know?

• about what your family or friends might think about this conversation?

What …..

• else do I need to know about you?

• are you worried / not worried about?

• matters most to you now or later?

• would a good day be like?

If you like, you can use this template for recording your loved ones wishes

8. Place of death

When considering and planning for the future, it is inevitable that many Carers’ thoughts turn to the place of death for their loved one.

The findings estimate that 210 people (5%) with dementia die in their own homes and “In over 50% of the sample, the decision to die at home was made in advance by the person with dementia or their families.”

Recent research also shows that, ‘If care at home is possible, this does not mean that death at home is preferred. Rather, there is evidence that the desire to die at home lessens with age and failing health’ Lancet (2021).

Place of death can and should be considered more broadly, and no one place should be seen as the most appropriate.

9. Caring at home

Dementia like other chronic life limiting diseases takes an unpredictable and often protracted course.

People with dementia living at home are mainly cared for by their spouses, followed by adult children and children in law. The care given is influenced by the Carers age, socio- economic circumstances, personalities, coping strategies and the relationship they have with the person with dementia.

As your care journey continues you need to think about some issues for you and the person you are caring for.

Reflective Exercise: Take 10 mins to think about these questions:

Has the person with dementia identified their preferences for end of life care?

Is their preference being at home?

Is reliable and responsive care available?

Will the home accommodate any equipment that may be required, such as hospital bed, commode, and hoist?

Are you physically able to move the person when they become unable to change their own position?

Can you meet your other family and work needs responsibilities as well?

Are you emotionally prepared to care for your relative as they are dying?

(Middleton-Greene, et al., 2017)

Post your answers to Home Care Indicators questionnaire on the Moodle page.

10. Considerations when making decisions

The decision to place someone in a Nursing Home for a short or long period is not made easily. For many Carers it is a decision about doing the right thing for the person they are caring for and for themselves.

Here are some considerations that might be worth thinking about:

Values are expressions of what is important to you. In late stage dementia it may be values such as safety, 24 hour care or knowing that the person with dementia is with family and friends. A person's values can influence one's health care decisions, and this may be especially true in the transitional period when the person with dementia may not be able to make decisions for him or herself. For example, as a carer you might choose for the person with dementia to have less night time medication so that they can walk without assistance in the morning.

Feelings and emotions can provide important information for our choices. Emotions can affect not just the nature of the decision, but the speed at which you make it. For example anger can lead to impatience, and rash decision-making. Some people feel bad when they do something wrong,(driving beyond the speed limit) but many people feel good even though they are doing something wrong ( some people keep driving, they want to be there quicker).

To act in the person's best interests – this is considering what is best for the person. What is the right thing to do, at this time? Will the quality of the remaining days / weeks be improved by this decision? (This is also called Beneficence, ‘doing good’, by health care professionals)

To do no harm - will leaving the person at home bring him/ her harm? Do I have the right skills to give care? (This is called Non-maleficence, ‘doing no harm’ )

The person with dementia has the right to be treated fairly - the person you are caring for has a right to care in an appropriate setting, regardless of their diagnosis. (This is also call Justice, everyone has equal access)

The person with dementia has a right to have a say in what is happening to them - what would the person want?  Knowing him/ her all their life, what would they want for themselves ,now? What wishes if any, has the person expressed prior to losing their capacity to communicate? (This is called Autonomy)

In summary; values, feelings and emotion together with logic and correct information have a role to play in helping us make positive decisions. 

11. Further help with decision making

Making decisions in proxy for another can be difficult.

Also consider

·         Take your time. Acknowledge that these are difficult times. You may find yourself in a scary place. This is natural, so it's necessary to rationalise fears in order to progress. But you will need a calm mind to see the whole picture

·         Consider other times, in the past, when you have had to make difficult decisions. Consider what helped you then

·         Talking with trusted family and fiends

·         Talking with the person you are caring for. It may be helpful,  in as far as possible, to  be honest with the person and try to communicate information in a positive, supportive, non-threatening way.

·         Writing things down. Putting the Pros an Cons on paper might help to unclog the mind and increase clarity.

·         Speaking with Health Care Professionals, PHN, GP , Occupational Therapist, Speech & Language Therapist (SALT), Dementia Advisor etc

·         If possible talk to other Carers who have  gone through Later Stage dementia

Take a look at this short video, called 'Beginning at the End - Being Brave'. It is about the complexities of feelings and needs of the carer at the end of life stage.

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A Guide for Family Caregivers to Placing a Relative with Dementia in a Nursing Home is available here

12. Case Study

Tony is 76 and has been living with Alzheimer's for 9 years. His verbal skills are deteriorating, he rarely speaks uninitiated. He answers in a quiet tone, to simple questions. He currently needs 24 hour supervision and help with all of his care needs, which is provided mainly by his wife Maura. He has home care every morning to help get dressed. He can no longer attend the Day Care Centre as his mobility is poor, and Maura cannot assist him in getting in and out of the car.

The Public Health Nurse calls and sees that Maura is struggling and says she would like to make an application for respite for Tony.

Maura cannot think straight.

1. What would help Maura, to guide her next steps?
2. What could she do next? Why?