Caregiver guide: How to start keeping a dementia journal for your loved one

Taking notes on dementia symptoms can help you feel more in control of your caregiving journey. Here's how to get started in keeping a dementia journal for your loved one.

What is dementia?

Dementia means different things for different people. There are a range of underlying causes, and a wide variety of expressions of dementia. Ultimately, dementia is a progressive disease which affects memory and cognitive function.

Dementia can begin as some simple short-term memory loss and progress to a stage where the person with dementia is completely unable to look after themselves.

It can affect nutrition and hydration, self-care, continence, independence, almost all of a person's usual activities, and even mood, personality and behaviour. People with dementia often need help with personal care and other activities as they reach later stages in the disease.

What is a dementia journal?

Keeping a dementia journal or dementia diary involves writing down patterns of need, activity and behaviour.

Having a record of changing behaviour and the changing levels of support for our loved ones can help us see patterns in a person's care needs. We may be able to identify triggers for challenging behaviour which can be pre-empted and mitigated.

Things to take note of in your dementia journal

A dementia journal is a document where we note changes, and will naturally become more thorough and involved as a person's care needs increase. The amount of information needed to help look after the person will develop over time.

In the early days of dementia a person may simply need occasional reorientation to their surroundings but be able to stay independent. In the middle and later stages, we find more challenges. A person may need help meeting any of their normal activities of daily living.

Noticing patterns of need can help us anticipate and meet changing requirements. Writing down the times, dates, and types of intervention helps us find patterns and triggers. Some things you should think about when you're keeping a dementia journal include:

• Continence
• Nutrition
• Hydration
• Behaviour
• Sleep patterns

Toilet routine

Even without dementia, some people become more prone to having issues with continence as they get older.

Having memory problems can make it very difficult to get to the toilet on time, and in later stages of dementia, a person may not be able to recognise the feeling of needing the toilet, or may be unable to express that need and ask for help.

Noting down the usual times and frequency of bladder and bowel habits can help carers anticipate the need for the toilet, and can also help carers understand what it may mean if a person with dementia becomes uncomfortable or agitated but unable to express their needs.

Identifying a usual toilet routine can mean improving a person's quality of life, allowing them to hold on to their dignity, and can even reduce problems with skin condition or constipation.

Eating habits

Nutrition and hydration are incredibly important, and can become an issue as dementia progresses.

A person may initially struggle with shopping or making their own meals, then may progress to forgetting to eat, and finally to an inability to physically feed themselves, swallowing difficulties, and refusing food.

Making sure a person with later stages of dementia gets enough to eat and drink can be a worry, but keeping a diary can help to alleviate some concerns, or guide care.

A food and fluid diary can help us notice when a person is most willing to eat and drink, and we may also find ways of managing problems with eating.

We may find that lots of small snacks are acceptable to someone who struggles to eat large meals, and we can then tailor those snacks to offer the kind of nutritional content our loved one needs.

Managing fluid intake is important, especially for those with kidney or heart disease, and keeping a diary of the amounts and types of drinks a person takes can help us tailor the things we offer them.

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Challenging behaviours

Unfortunately, some people with dementia exhibit changes in their mood, and even their behaviour.

Sometimes, we may even miss underlying mental or physical health problems that may be affecting a person's mood or behaviour simply because their symptoms of dementia mask their expressions of other illness.

Noticing patterns of change can help us plan ways to manage these changes, and can help us understand that unusual changes may signify other problems that warrant investigation.

Challenging behaviour in dementia can take many forms; a person may become agitated, even aggressive, may have episodes of acute confusion, or they may seem subdued and withdrawn.

Some changes in behaviour may be manageable at home, but some might not. It's okay to ask for professional help if behaviour is difficult to manage, if it is worrying, or even if it is upsetting.

Noting down the timing and nature of behavioural changes can help us notice emerging patterns and even sometimes link challenging behaviour to medications, to hunger or continence problems or other physical or psychological needs.

Someone who always becomes agitated in the evening or early morning with no clear cause may respond well to distraction techniques at those times; just staying busy — within their individual abilities — can help ease those challenging times.

Sleep patterns

Sleep is incredibly important for our physical and mental wellbeing, but it is very often one of the most significant challenges in dementia.

Sleep patterns change — sometimes with no clear cause, or sometimes with changes in daily routine, with a decline in physical activity and mental stimulation, or with emerging problems like overnight incontinence or behavioural changes.

Again, identifying patterns is sometimes the key to improving life for the person suffering from dementia and their loved ones and other caregivers. Sometimes something as small as a change in evening or morning routine can make a difference, or simply going to bed at a slightly different time.

It may be that keeping a diary helps us identify a specific problem, for example, that our loved one is consistently incontinent at 2am; waking them for a quick trip to the toilet at 1.30am might actually make for a better night's sleep for everyone involved, as well as helping to maintain dignity, mental and physical health.

Summarising information for carers or medical appointments

A diary of our loved ones' changing needs and symptoms can be a valuable tool when we're assessing and planning care.

A gradual shift in symptoms can sometimes make it harder to identify the point at which we need to ask for extra support — keeping a dementia journal can help us make a frank and realistic assessment of care needs.

Keeping a list of emerging challenges and an overview of patterns of symptoms can help us ask the right questions at appointments with doctors and other professionals.

The more information we can give to the professionals involved in your loved one's care, the more individualised and tailored their care plans can be.

If someone with dementia needs to have carers coming to the home, or has to spend some time in a formal care setting, a document setting out medical and social care needs can guide those carers to provide the best possible services.

Likes and preferences of your loved one

Even with profound changes in a person's abilities, mood, personality and understanding of the world around them, they are individuals and their preferences and beliefs should be respected.

This isn't always easy, especially for those with limited communication who find themselves in an environment with unfamiliar carers, such as an acute hospital admission.

A document that explains their basic needs means they can expect the best care for themselves as individuals.

Keeping a list of their likes and dislikes is a useful part of a dementia journal, and can help with relationships with formal or informal carers or with smooth transitions into other care facilities.

Having a document summarising your loved one's basic care needs, especially if communication is a challenge, means they can have their care needs met in a way that would be acceptable to them.

Dietary preferences, religious observances, the kind of clothes they like to wear, even something as simple as the way they take their tea can help a person retain their independence, individuality and dignity.

Medications

As we age we are more likely to develop a range of medical conditions, and someone with a number of different conditions may end up with a complicated medication regime. Taking medicines at the right time can be very important, as can the interval between certain medications.

Some tablets need to be taken with meals, others without. Injectable medicines, creams and ointments, suppositories and other forms of medication can come with their own challenges.

Medication compliance can be an issue, especially when someone with memory problems is still living independently. Some people find that their mood and behaviour are variable and may affect their willingness to take medications.

There are various aids to medication compliance for people with some memory loss, but in mid-to-late stage dementia, a person may become reliant on their caregivers to ensure they are taking any medicines properly.

Keeping a journal of medications taken, of side-effects and other issues can help doctors and carers tailor treatment and medicines management to fit each person.

Keeping a dementia journal

There is no right or wrong way to keep a dementia journal , and different people may prefer to set them out in different ways; it could simply be a list with dates and times of any interventions or anything we notice about our loved ones' care needs, or it could be a more formal page-by-page format set out to remind us about what we need to take note of.

This may need to be adapted alongside any disease progression and changes in care.

Some examples of headings in a dementia journal could be:

• Timings of trips to the toilet or episodes of incontinence.
• Food diary, including types and amount of meals taken, any changes in appetite or new concerns about swallowing or interest in food. Taking regular weights can be useful to help assess someone's nutritional status
• Fluid chart — dehydration is common in dementia, and some people with heart or kidney disease may have important targets or restrictions for their fluid intake.
• Sleep patterns — it is fairly common for sleep patterns to change in people with dementia, but tiredness and disordered sleep can also make symptoms worse.
• Changes in mood or behaviour — do these occur at specific times of the day, and can they be linked to any other basic needs, like tiredness, pain, hunger, or needing the toilet?
• Other issues — this could be compiled into a separate list, useful for taking to GP appointments or sharing concerns with other caregivers.

A day-to-day dementia diary could also include checkboxes to help ensure that medications are ordered, given and taken at the right times, and to record daily essentials like when the person has bathed or showered.

Keeping a journal — for people with dementia

If the person with dementia is able, they may like to keep their own diary, which can give personal insight into their needs and desires, hopes and fears throughout this progressive and often all-encompassing disease.

If they can keep their own notes about their daily routine, including symptoms and triggers, it can help them retain autonomy and control over their disease and care.

A person's own assessment of their needs can sometimes be enlightening, and can help us to tailor our care to their individual values.

When someone with dementia is able to keep their own journal, it can help to reorient them to their daily life, and can also give us valuable insight into our loved ones' hopes and fears — if they want us to read them.

Encouraging someone with dementia to write a book of their memories can help us to understand them, even if they begin to struggle with communication later.

READ ALSO: What not to say to someone with dementia

This article was first published in Homage.