4. Supporting changes due to dementia

Support people to manage changes

Providing therapies, treatments, and strategies to help the person and their carer cope with symptoms and changes which affect the person day to day, is an important part of helping the person to move forward after a dementia diagnosis.

People with dementia and carers tell us that they are often unsure what drug treatments and non-drug therapies are available for dementia.  Many people understand that there is currently no cure for dementia, but may not be aware that there are drug and non-drug therapies to help manage symptoms.  They may also want to consider technological solutions to manage changes such as devices that play reminders, talking clocks and other suggestions.

Symptoms of dementia are not always commonly understood and people are often distressed by these changes and unsure how to manage them.  You can guide them to different types of therapies and treatments to manage these changes.

We bring together current guidance, resources, research, and the experiences of others to help you to support the person with dementia and their carer to understand and manage common symptoms of dementia and how these can be managed.  This will help the person and their carer find appropriate treatments to manage the symptoms which most impact on their lives and help them to cope with change as they move forward on their journey. 

To help you quickly access key information, Forward with dementia provides a brief summary of the issues relating to post diagnostic support from diagnosis with a direct link to the supporting resource.  You can also signpost the person with dementia and their carer to the area of the website tailored for them.

Help the person understand and manage changing needs 

Understanding and coping with symptoms of dementia can be difficult.  People are often surprised how dementia can affect the person.  Whilst they understand that dementia affects memory, they are often less aware that dementia can affect other functions such as the person’s ability to think, talk, write, their personality, behaviour and ability to continue with daily activities.  People are often distressed and upset by some changes and behaviours and unsure how to manage these.  Carers can particularly benefit from strategies and tips to understand and manage cognitive and non-cognitive dementia symptoms.

You can direct the person with dementia and their carer to the Forward with dementia

Manage non-cognitive changes in dementia

Many people will experience non-cognitive symptoms of dementia.  These psychological and behavioural symptoms occur more commonly in the middle to later stages of dementia but can occur at any time and can be quickly brought on by things such as infection, dehydration, and new drugs. These symptoms are often the most difficult for carers to cope with.  Symptoms such as agitation, aggression, distress, confusion, depression, and anxiety may manifest in behaviours such as 

• Repeating the same question or activity 
• Restlessness (e.g., pacing, wandering, fidgeting)
• Sleep disturbance and night-time waking
• Following a partner or spouse around 
• Loss of self-confidence, apathy, or disinterest in usual activities.

Best practice guidelines recommend that a structured assessment should be carried out before beginning treatment to check for clinical and environmental causes. 

The NHS dementia guide recommends a range of simple strategies carers can adopt to manage challenging symptoms and behaviours .  

These include:

• Working out what triggers the behaviour or response (keep a diary)
• Noting any sudden changes in behaviour or mood which may be caused by an underlying health condition
• Keeping normal activities and social events going as much as possible
• Giving reassurance
• Ensuring the environment is calm and relaxing.

Action

• Direct the carer to Carer  Managing Symptoms and Changes of Forward to find out more about managing dementia symptoms.

Equip carers to respond to change

Carers will have their own support needs (Read more about supporting carers in  Connecting people with dementia and carers to support), however some carer stress can be reduced by equipping carers to understand and manage common dementia symptoms.

National evidence-based best practice guidelines also recommend that carers should be supported by offering psychoeducation and skills training such as:

Information to access support services and psychological therapies for themselves

Education about symptoms and changes as dementia progresses

Training on how to care, understand and respond to behaviour changes, and how to adapt their communication with the person with dementia

Read more about supporting carer-specific needs in  Connecting people with dementia and carers to support

 

Review needs regularly

Dementia symptoms will change as the condition progresses, so regular review (for both the person and their carer) is necessary to ensure symptoms are being managed appropriately.

Current evidence-based best practice guidelines recommend that care and support should be planned and reviewed regularly to ensure changing needs are being met with appropriate interventions. This includes management of comorbidities which affect the person.  Read the recommendation on care co-ordination.  

Find out more about co-ordinating care Connecting people with dementia to support and care planning Practical support for shared decision making)

Treatments and therapies for dementia

A common misconception is that there is nothing doctors can do for a person with dementia. This is a myth. There is a lot that you can do to maintain or improve the quality of life of persons with dementia and their carers.

There are a range of medical and non-medical treatments and therapies available to manage and potentially slow down dementia symptom progression.  Treatments should be appropriate, supportive, and tailored to the needs of the individual.  The main goals of treatment are to:

• Maintain or improve quality of life
• Maximise function in daily activities
• Enhance cognition, mood, and behaviours
• Foster a safe environment
• Promote social engagement
• Promote independence
• Maintain the person’s feeling of being in control.

The NHS Dementia guide gives a general overview of different types of drug and non-drug therapies for people with dementia .

You can find more detailed, evidence-based best practice recommendations in the NICE Dementia guideline Dementia: assessment, management and support for people living with dementia and their carers NICE guideline [NG97] 

Non-drug dementia therapies

Ensure the person and their carer are aware of different non drug therapies which support the person’s wellbeing and cognition.  These can help the person to stay connected with others, remain independent as long as possible, support their mood and their ability to take part in daily activities.

National evidence-based best practice guidelines recommend the following non-drug interventions to promote cognition, independence, and wellbeing in dementia.

Tailored activities which promote wellbeing 

A range of activities based on the person’s preferences.  This could be individual activities the person has always enjoyed or group activities.  These may be community groups or dementia specific group activities such as going to a dementia café  or singing for the brain. 

Group cognitive stimulation therapy (mild to moderate dementia)

Cognitive stimulation therapy (CST) is delivered through group activities and exercises. It can improve memory, problem-solving skills, and language.  Evidence suggests that it is most likely to benefit people with mild to moderate dementia. Find out more about CST here.   CST is available through the NHS in some areas. Memory clinics may run courses.  GP’s can make referrals for CST.

Group reminiscence therapy (mild to moderate dementia)

Reminiscence therapy enables the person to share their life experiences, memories, and stories from their past. This focuses on the person’s strength of recalling memories and past events.  Find out more about reminiscence therapy here.  Organisations such as the Alzheimer’s society and Dementia UK may offer local reminiscence services. They also offer a range of ideas to support the person and their carer to do this independently.  See Dementia UK for ideas. Alzheimer’s society provide a range of suggestions for reminiscence activities  and resources like local libraries and museums may also have reminiscence collections.

Cognitive rehabilitation or occupational therapy to support functional ability (mild to moderate dementia)

Cognitive rehabilitation helps the person to use parts of the brain which function better and compensate for lost function.  This can help the person cope better with everyday tasks.

A trained professional such as an occupational therapist can help the person to achieve goals related to routine daily tasks.  This service may be available through NHS memory clinics although provision is limited. Families and friends can also support this. Find out more about the benefits of cognitive rehabilitation here. 

Treatments such as: acupuncture; vitamin supplements; cognitive training, interpersonal therapy, and non-invasive brain stimulation for mild to moderate Alzheimer’s disease are NOT recommended.

NICE national dementia guidelines provide details of treatments not to  recommend. 

Although cognitive training is not recommended in the NICE guidelines, emerging evidence demonstrates moderate improvement in global cognition in people with Mild Cognitive Impairment and dementia. Find out more in the in this review:  Toward a theory‐based specification of non‐pharmacological treatments in aging and dementia: Focused reviews and methodological recommendations (wiley.com)

 

Dementia drug treatments

There is currently no cure for dementia, although these are in development. Alzheimer’s Research UK has a blog about emergent drugs.  However, medications can help slow disease progression for certain types of dementia.  The Alzheimer’s Society provide a helpful overview of drug treatments.

Decisions about dementia medication are usually initially made at diagnosis and are dependent on dementia subtype. This is usually done at the memory or hospital clinic. Medication review and arranging follow-up prescriptions are usually managed by the person’s GP.  Each medication has benefits and side effects which the person will need to be made aware of. 

Below is a summary of drug treatment by dementia type.  Please refer the NICE recommendation on pharmacological intervention. 

 Alzheimer’s disease (and mixed Alzheimer’s disease and vascular dementia).

Acetylcholinesterase (AChE) inhibitors are the main treatment.  They prevent an enzyme from breaking down acetylcholine in the brain and helps nerve cells communicate. Donepezil (Aricept), galantamine (Reminyl) and rivastigmine (Exelon) are usually recommended as options for managing mild to moderate Alzheimer’s disease. 

Memantine (Nameda) is recommended for people who are intolerant of or have a contraindication to AChE inhibitors and people with severe Alzheimer’s disease.  Memantine may also be offered for people already take an AChE inhibitor in the more advanced stages of dementia.

Dementia with Lewy Bodies

AChE inhibitors donepezil or rivastigmine for people with mild to moderate dementia 

Galantamine for people with mild to moderate dementia if donepezil and rivastigmine are not tolerated.

Donepezil or rivastigmine for people with severe dementia with Lewy bodies

Memantine for people with dementia with Lewy bodies if AChE inhibitors are not tolerated or are contraindicated.

Vascular Dementia

AChE inhibitors or memantine if they have suspected comorbid Alzheimer’s disease, Parkinson’s disease dementia or dementia with Lewy bodies.

Frontotemporal dementia

AChE inhibitors or memantine are not recommended.

Common side affects

Side effects of AChE inhibitors can include nausea, vomiting and loss of appetite which usually get better after 2 weeks.  Patches may be used instead of oral medication for some AChE inhibitors such as rivastigmine. Patches provide continuous slow release which may be associated with fewer gastro-intestinal side effects but they can cause skin irritation. 

Side effects of Memantine are usually temporary and include headaches, dizziness, and constipation.

General medical health

It is important to manage comorbidity as other conditions can impact on dementia symptoms . Here are some tips:

• Check the person is taking medication regularly. What is their system to ensure this happens? For example, dosette box, reminders.
• Check that poor vision and hearing are adequately corrected. When was last time glasses or hearing aids were reviewed? Sensory impairment magnifies cognitive impairment.
• Check the person is regularly cleaning their teeth. Has their carer monitored this?
• Check the person’s weight regularly. Is the person forgetting to eat? Or eating too much, for example forgetting they have eaten or have cravings as in fronto-temporal dementia, and putting on excessive weight.

Technology to manage changing needs

There are many different ways the person with dementia and their carer can use technology to manage dementia symptoms.  Assistive technology is the use of electronic devices and systems to support the person in their everyday life.  Using this technology can help people maintain or improve their independence, safety, and wellbeing. The Alzheimer’s Society provides a useful guide to using technology in everyday life. 

Assistive technologies are not necessarily expensive.  If the person already has access to a smartphone, tablet or computer, using calendars for reminders or using apps to keep cognitively active or organise appointments can be an inexpensive solution to meet some needs. Signpost the person with dementia to Article on Dealing with memory and thinking difficulties and Article about Managing difficulties at home

Everyday examples of using assistive technology to support independence, safety and wellbeing include:

• Using Virtual assistants such as Alexa to set prompts or ask simple questions to support orientation
• Dementia clocks which clearly display the day, date, time, and period of the day (e.g., morning, afternoon, evening)
• Using shared online calendars
• Apps such as pill reminders, brain training, mindfulness, and relaxation 
• Electronic medication boxes

Ask Sara provides local information on how local authorities in some areas of England, Scotland and Wales can access assistive technology in relation to specific needs such as wellbeing and everyday activities.  Click on the link for your local area. 

Actions

• Find out if the person and carer have access to devices to support the use of Assistive technology.

Direct the person to with dementia to Dealing with memory and thinking difficulties and Managing difficulties at home  to find out more about how they can find and use assistive technologies to manage their needs.