2

Taking a life history

The key to success in giving an activity to a person with dementia is that it has to be engaging. By engaging I mean interesting, pleasing, attractive, fascinating, entertaining, captivating, agreeable or likable. The person with dementia has to want to start doing it and keep doing it. Preferably the activity will be actively engaging, so instead of just passively watching the activity the person will want to actively take part. Watching something activates some brain areas; however, actually participating activates more brain areas more strongly.

An activity is more likely to be engaging for someone with dementia if it is:

Along with your understanding of their current abilities, another important tool in choosing appropriate activities for the person you care for is knowledge of their life history. This is the focus of this chapter.

The steps to choosing appropriate activities

Choosing appropriate activities for a person with dementia is an art not a science. The process is somewhat trial and error; some activities you try will be enthusiastically and positively received, others will be rejected and others will simply be met with disinterest. Each reaction, positive or negative, will give you information that will increase the likelihood of success for the next activity you try.

Here are the basic steps.

  1. Identify the person’s current abilities (you already did this in Chapter 1). This information will help you tailor activities so that they are achievable by the person with dementia.
  2. Find out about the person’s life history (this is the topic of this chapter). This information will help you select or tailor activities so that they are meaningful to the person.
  3. Use the information gathered in steps 1 and 2 to brainstorm ideas for how to tailor activities for the person with dementia. This is the topic of Chapter 3, however the remaining chapters all give ideas for selecting and tailoring different types of activities.
  4. Trial each activity and reflect, modify and amend it where needed.

Components of a life history

In order to maximize the enjoyment and engagement of the person with dementia, we start by choosing topics or activities that they used to enjoy in the past or that are related to their life in some way.

If you know the person well you may already know their social history, nonetheless it is helpful to write this information down and reflect on it in preparation for brainstorming activities that they may enjoy. If you don’t know the person with dementia well, try to ask them about their social history, even if they cannot converse with you fluently or answer all your questions. Interview or consult with a family member or friend who knows the person, too, to get as much information as you can. There is a worksheet (See Table 2) that will help you document this information.

Here are important components of most people’s life histories, which help in planning activities to do with them.

Places of significance (one or two)

Where were they born? Where did they spend their childhood? Where did they live? Are there any places that are special to them and why?

The ‘culture’ the person grew up in and lived in may be an important topic for them. Information about culture may also help others understand the lens through which the person is interpreting their current surroundings. For instance, if the person grew up during wartime in a culture of deprivation and suspicion, the person may be suspicious of authority figures, ultra-protective of their possessions and constantly worried about the safety of their family.

People of significance

Who are or were the important people in their life? Most often this is a spouse and children, but it could also be a parent, or best friend or other relative. What was the person with dementia’s relationship with the person like, and what is the relationship currently like?

Activities of significance

What did the person do for a job? What did the person do in their spare time? Were there any things the person was particularly passionate about? Activities can be anything at all that the person was interested in ranging from an individual hobby, something they did around the house, a group activity (church, Rotary) or even something that they only did actively for a little while but continued to be interested in (e.g. played cricket during adolescence and followed the game throughout life).

Identify activities that the person with dementia currently enjoys doing. These could be small things such as going for a walk or listening to music. We need to keep doing these things with them, and you may be able to build on and extend these activities.

Events of significance

Were there any events (negative or positive) the person experienced that were important to them? These could have been life-changing activities such as fighting in a war, living through an earthquake or having a child. These could also include memorable events such as watching a Melbourne Cup race live, meeting the prime minister or competing for their country. If the event is negative and the person didn’t like talking about it, then it is particularly important to document this and make sure to avoid this topic.

Personal recreation preferences

Did they like to do things quietly by themselves, or did they like doing things in groups? When in groups, did they like to be the organizer, or participate but not be the centre of attention? Did they enjoy being with people they knew well or did they like meeting new people? How did they like to ‘play’?

What is missing?

What is missing from the person’s life? Is it company, or meaning, or employment or a feeling of being valued and important? What roles did they have previously that were important to them that they have lost?

If there are many people involved in the care of the person with dementia, some of whom may not know the person well, it may also be useful to create an ‘all about me’ sheet with the key information written down and including photos if possible so that it is easy to share this information with any new carers. There are also books and templates that Alzheimer’s Australia has published that can be used to help record information for carers (see ‘Further resources’).

Tips for people with dementia

You probably have activities that you enjoy doing already. If you want ideas for new activities to take up, here are some questions to ask yourself.


Case studies

Throughout the book we will look at the lives of four people living with dementia: Joy, Antonio, Ruth and Brian. We will learn more about their stories and their interactions with their carers through the rest of this book. Let’s start by taking a look at each of their life stories along with the table assessing each person’s current thinking abilities (see Table 1).

Case study
Joy

Joy has mild Alzheimer’s disease and lives at home with her husband.

1. Places of significance
• Joy was born in Surry Hills in Sydney and has lived there all her life. For her honeymoon, her husband took her to England and France, places for which she has a special fondness. They would take overseas trips every two or three years, though she appears to remember these less clearly.
2. People of significance
• Joy and Bernie married relatively late, in their thirties, and did not have any children. Bernie ran an accounting business and until lately was active with their local Probus club. They are not close to any family, and Bernie says that while Joy had lots of friends they seem to have fallen away since she developed dementia and her conversation and behaviour changed. She only goes with Bernie to Probus club events now, and does not talk much at those.
3. Activities of significance
• Joy worked in retail, in fashion boutiques, for many years. She then worked casually as an extra in film and television, and continued to do this work into her late sixties. She said she enjoyed meeting people in show business. While describing herself as not being a good cook, Joy said she liked having people over, and Bernie says she was quite the hostess. Joy continues to take pride in her appearance and always puts on lipstick and powder before going out.
4. Events of significance
• According to Joy, the most important event in her life was her marriage to Bernie and their honeymoon.
5. Personal recreation preference
• Bernie describes Joy as extroverted and someone who liked to make people happy. She liked being with others rather than being alone; this is more so since she developed dementia.
6. What is missing?
• Joy says that she is happy with her lovely husband and home and that there is nothing missing in her life. Bernie says, however, that Joy misses having other women to talk to.

Here is the table for Joy, detailing her current thinking abilities. We can see that Joy’s abilities match a typical pattern for Alzheimer’s dementia. She has slight difficulties but has the cognitive abilities to participate in many different activities.



Case study
Antonio

Antonio has mild to moderate vascular dementia and lives at home with his wife, Maria.

1. Places of significance
• Antonio was born in Sicily, Italy. He migrated to Australia after World War II with his brother, Francesco. After working on a farm for five years, he started a convenience store in Brunswick, Melbourne. He has lived in South Melbourne since.
2. People of significance
• Antonio’s wife, Maria, is twenty years his junior. They were introduced through family in Italy and corresponded by mail before Antonio returned to Italy to court her. Maria agreed to marry him and came to Australia to be wed the next year. They had two children, a boy, Antonio Jr, and a girl, Sofia. Antonio was close to his older brother, Francesco, however Francesco also has dementia and now lives in a nursing home.
3. Activities of significance
• Antonio worked hard in his convenience store business, which at its peak had ten employees. He was also active with the Brunswick Juventus Soccer Club, and in its heyday and afterwards would regularly attend games and support fundraising events. Currently he does very little: he waters the plants and enjoys his food.
4. Events of significance
• Antonio talks about his marriage to Maria and the birth of his children as being important events in his life. Another significant event was having to close his convenience store and retire in the mid 1990s because financially it was more profitable to sell to developers, who wanted to renovate the building and turn it into housing. Maria reports that in 1985 Brunswick Juventus won the national soccer league, which was also an important time for Antonio.
5. Personal recreation preference
• Maria describes Antonio as having been a sociable but private man. He knew everyone in the neighbourhood but didn’t take many people into his inner circle except for his brother and family.
6. What is missing?
• Maria says that Antonio misses having a purpose in his life. He also has lost confidence in what he knows and in being able to make decisions for his family.

Here is the table for Antonio. He has more difficulties with attention and concentration and may need to be more supported in tasks requiring these skills.



Case study
Ruth

Ruth has moderate mixed vascular dementia and Alzheimer’s disease. She lives in a nursing home.

1. Places of significance
• Ruth was born in Bath, England, and migrated with her husband and three daughters to Australia in her thirties. They lived in Brisbane and Adelaide before retiring to the Adelaide Hills.
2. People of significance
• Ruth’s three daughters are Jane, Julie and Hannah. Julie and Hannah both live in Adelaide, Jane lives in England. She has several grandchildren, and was particularly close to Jade and Jordan, whom she would often look after. Ruth’s husband passed away when the girls were teenagers and Ruth never remarried. Ruth’s best friend is Helena. She used to have lunch once a month in Adelaide with a group of former colleagues from the hospital where she worked for many years.
3. Activities of significance
• Ruth worked as a nurse her whole life, first in the maternity ward, then in the general wards. When her husband died, she often worked night shifts so she could be home during the day for the girls. She took up knitting and crochet when she worked night shift as she said it helped her pass the quiet times. Later she was active in the hospital’s fundraising committee and she donated many handmade items for sale in hospital fundraisers. Ruth no longer undertakes any activities.
4. Events of significance
• Ruth’s daughter Hannah describes Ruth as being proud that all her three daughters graduated from university, and that after her last daughter graduated Ruth said she had done her job.
5. Personal recreation preference
• Hannah describes Ruth as being sociable but quiet. ‘She spent her life caring for others,’ says Hannah.
6. What is missing?
• Hannah and Julie both talk about Ruth losing confidence and not having anything to do any more. They say she no longer has a role in life because she can’t help people any more.

Here is the table for Ruth. She has relatively good communication abilities, relative to her memory and attention.



Case study
Brian

Brian has moderate to severe fronto-temporal dementia. He lives in a nursing home.

1. Places of significance
• Brian was born in the regional city of Orange, in central New South Wales, Australia, a well-known farming and agricultural region. He has lived there all his life.
2. People of significance
• Brian never married. His nephews, Gary and Daniel, are involved in his care but don’t report a close relationship with their uncle. Their father, Brian’s brother, would have expected them to help look after Brian and they see it as their responsibility to be involved in his care. Brian has always been close to John, who was a school friend and then later his business partner.
3. Activities of significance
• Brian’s father was a butcher, so he apprenticed as a butcher, but later changed his mind and started working as a mechanic fixing farm machinery. He went on to start a farm machinery business with John. Brian does not currently undertake any activities.
4. Events of significance
• Gary says that his uncle didn’t talk much about his experiences in the Vietnam War, but he thought that this has probably affected him greatly. His uncle was a disciplinarian, placing value on respect and hard work.
5. Personal recreation preference
• Gary said that his uncle was very close to John, who visits him weekly in the nursing home, but otherwise was a loner and didn’t like being with people. He has never been close to his brothers and sisters and the rest of the family.
6. What is missing?
• Gary rather vaguely says that Brian is missing everything that is important in his life now, although he’s not sure if Brian really notices missing those things.

Here is the table for Brian. His short-term memory is relatively good compared to his other abilities, but he seems to have difficulty with attention and decision making.