Guidance and Resources on Alzheimer's Dementia for Carers of People with Down's Syndrome

Max Neill (UK)


People with Down's Syndrome are more likely than the general population to develop Alzheimer's dementia. They are also more likely to develop Alzheimer's dementia at an earlier age. This table shows the percentage of people with Down's Syndrome who develop dementia at different ages:

AgePercentage with clinical signs of dementia.
30's 2%
40's 10-15%
50's 33%
60's 50-70%

Although there is no cure for dementia, an early diagnosis can mean getting the help a person needs earlier, and have a significant effect on maintaining their quality of life.

It is therefore well worth knowing:

  • What Alzheimer's dementia is.
  • Signs and symptoms of Alzheimer's dementia.
  • Other possible causes of these signs and symptoms.
  • How to assess a person's skills.
  • What you can do to help someone live with dementia.
  • Where to get more information and help.

What is Dementia?

Dementia is the term used to describe a number of different diseases or disorders of the brain. It is characterised by the progressive deterioration of mental abilities, behavioural changes and a decline in skills levels. There are a number of different types of dementia, of which Alzheimer's is the most common.

Alois Alzheimer: first described Alzheimer's disease in 1906. Dementia is characterised by a progressive and usually gradual decline in a person's ability to learn, to remember, to use practical and social skills, and to process information from their senses.

(Earnshaw & Donnelly 2000)

Dementia also affects a person's language abilities, emotions and behaviour. Whilst there are a number of different types of dementia, Alzheimer's disease is currently the most common type. People with Down's Syndrome are at greater risk of developing this type of dementia, compared to the general population.

Alzheimer's disease is caused by changes in the nerve cells of the brain, which interfere with the way these cells communicate with each other, and with the signals they send to the rest of the body.

It is often difficult to diagnose in people with intellectual disabilities, partly because the symptoms can be quite subtle and develop slowly, because symptoms can often be wrongly attributed to the intellectual disability, and because carers can often 'compensate' for the person's cognitive deficits by guiding and prompting them, or by filling gaps in their speech.

Dementia is irreversible, but early detection can mean that it is possible to make plans for the future, adaptations can be made in a person's environment, and additional care services involved, in order to preserve the person's quality of life for as long as possible.

Signs and symptoms of dementia
People with Down's Syndrome tend to have similar symptoms of dementia to other people with the disease, though the progression of the disease can be more rapid.

Common early symptoms of Alzheimer's disease
  • Loss of interest in activities
  • Short term memory loss
  • Withdrawal of spontaneous communication
  • Loss of amenability and sociability
  • Loss of domestic skills
  • Increase in wandering
  • Loss of Road Sense
  • Problems in unfamiliar places
  • Epileptic fits
  • Loss of comprehension
  • Confusion or disorientation

(Marler and Cunningham 1994)

Common symptoms in later stages of Alzheimer's disease
  • Loss of personal care skills
  • Loss of mobility
  • Episodes of depression
  • Hallucinations
  • Delusions
  • Irrational fears
  • Screaming
  • Incontinence
  • Verbal aggression
  • Physical Aggression

(Marler and Cunningham 1994)

The progression of the disease can be different for different people, and can seem to progress more or less rapidly, or even pause at different times.

Deb et al (2007) have identified some clinically meaningful areas of deterioration that may be seen during the early stages of Alzheimer's dementia in people with Down's Syndrome.

Early symptoms that may occur in people with Down's Syndrome & Alzheimer's Dementia

  • Forgetfulness (loss of short-term memory, but intact long-term memory)
  • Confusion (e.g., putting clothes on the wrong way)
  • Difficulty following more than one instruction
  • Slowing down (e.g., in walking / eating / speaking)
  • Speech & language changes (e.g., repetitive questioning)
  • Changes in sleep (e.g., night-time wandering)
  • Loss of skills (e.g., using stereo / phone)
  • Problems socialising (e.g., becoming more reclusive)
  • Loss of confidence (e.g., difficulty walking on uneven surfaces)
  • Increased obsessions (doing things over & over again)
  • Altered personality (e.g., less outgoing)
  • Problems with balance (e.g., unsteady walking)
  • Emotional difficulties (e.g., unexplained crying / screaming)
  • 'covering up' (e.g., saying 'sorry' when unable to recall something)
  • Visual hallucinations
  • Unexplained body aches & pains

(adapted from Deb et al, 2007)

It is important to remember that some people with Down's Syndrome may have always had some of the above symptoms. The emergence of new symptoms (or worsening 'old' symptoms) are the best markers for suspecting dementia. Some of the symptoms may also be due to other causes (e.g., sensory problems, depression).

Alzheimer's disease and the brain

Signs and symptoms of Alzheimer's Dementia may vary according to which part of the brain is affected by the disease.

The following table charts the various functions of different parts of the brain.

Temporal Lobes (left) Verbal memory, smell, taste, short-term memory.
Temporal Lobes (right) Visual memory, smell, taste, short-term memory.
Parietal Lobes (left) Organisation skills, language, making sentences, sequencing (such as getting dressed, making a cup of tea), distinguishing right from left.
Parietal Lobes (right) Thinking in three dimensions, location in space, length and depth, seeing steps and obstacles.
Frontal Lobes New Learning, planning and organising, the 'initiator': - the part of the brain that gets us going. People with damage to this region may need prompting to start or stop an activity.

Personality & behaviour.

Limbic System Sleep, appetite, emotion.
Cerebellum Balance and coordination of voluntary movements, like walking, sitting or climbing stairs.
Hypothalamus Important in memory and learning.

People with Down's Syndrome may have pre-existing structural abnormalities in parts of the brain (particularly the frontal & temporal lobes). This can make diagnosis difficult if it is just based upon the results of a brain scan (CT brain). Results of such tests need to be taken in conjunction with the clinical symptoms, a good history from the family & carers (of the person's previous level of functioning), and by excluding other conditions that may 'mimic' dementia.

Other possible causes of dementia-like symptoms
There are a number of other disorders that might cause some of the symptoms of dementia listed earlier in this pack, many of which require early treatment. Physical investigations may need to be done to exclude some of these disorders (e.g., physical examination, blood /urine tests, X-rays). It would be wrong to automatically assume that someone has Alzheimer's dementia, just because they have Down's Syndrome.

Other possible causes can include:

*  Normal age-related cognitive decline
“While aging brings changes in the quickness and ease of thinking and remembering, the changes do not dramatically differ from prior levels, do not occur rapidly, and should not significantly interfere with daily activities” (Insel and Badger 2001)

*  Acute confusion
Acute confusion/delirium can be caused by infections (e.g., chest & urinary tract infections), central nervous system disorders, using many different medications at once, malnutrition, dehydration, gastrointestinal and genitourinary disorders, heart and lung problems, difficulties with vision, hearing and other senses, bereavement and loss and even impacted earwax.

"The primary distinction between delirium and other sources of changing cognitive function is the rapidity of onset, fluctuating symptoms, the duration of symptoms from hours to days, and reversibility." (Insel and Badger 2001)

*  Depression
Symptoms of depression include: sleep disturbance, lack of interest, guilt, reduced energy, difficulty concentrating, appetite changes, psychomotor disturbances and suicide. It can lead to lack of concentration, memory deficits and slowed speech. (Insel and Badger 2001)

*  Hypothyroidism (an 'underactive' thyroid gland)
Symptoms of hypothyroidism can include: weight gain despite not eating more, dry skin, intolerance to cold weather, bradycardia (a slow pulse rate), constipation.

Is It Dementia? - A Procedure For Investigating possible dementia in people with learning disabilities.

If you notice the following changes:
  • Decline in abilities and/or loss of skills
  • Deterioration in personality or behaviour
  • Poor memory and/or confusion

Then you should consider all the following:

Stress ThyroidDepressionSensoryPhysical CausesDementia
Concentration problems Lethargy Disturbed Sleep Ignores Instructions Withdrawal Loss of Recent Memory
Irritability Weight Gain Loss of Appetite Mobility Problems Aggression Loss of Skills
Decline In Abilities Cold Intolerance Low Mood Loss of Confidence Self Injury Changes in Mood
  Changes in skin and hair Withdrawal from usual activities Shouting or raised voice Pacing Orientation Difficulties
   Tearful   Screaming Sleep Disturbance
     Crying Language Difficulties
Yes YesYesYesYesYes
Identify Stressor: See GP See GP Complete full health surveillance: See GP Refer to CTLD
Recent Life event? Annual Blood Tests Medication and/or counselling Check Medical History and Physical Investigations Follow on referral to appropriate clinicians
(E.g., Death, a Move, illness etc) Under or Over Active Thyroid   Eyes Medication changes E.g.; GP, Psychology, Neurology O.T.
Offer Support and Reassurance Medication   Ears Diabetes  
Relaxation and Anxiety Management    Feet Pain  
    Access appropriate services Urinary Tract Infections S.A.L.T. Physio
     Nutritional Deficiency/Dehydration Memory Clinic

(Adapted from: Earnshaw, K. & Donnelly, V. 2000)

How to assess a person's skills:
It is beneficial to diagnose dementia as early as possible, but it is often difficult to spot a slow decline in the abilities of someone you see every day.

Because of the higher risk of Alzheimer's dementia in Down's Syndrome, and the earlier onset, it is advisable to regularly assess a person's various skills, establishing a 'baseline assessment' so that it is possible to spot changes in ability sooner rather than later.

It is advised that in people with Down's Syndrome, a baseline assessment should first be done at the age of 30, and then at 35, 40, 43, 46, and then annually.

There are a number of established assessment tools that can help in the diagnosis of Alzheimer's dementia in people with Down's Syndrome. These include the Dementia Questionnaire for Persons with Mental Retardation (DMR) (Evenhuis, 1996) and the Dementia Scale for Down's Syndrome (DSDS) (Gedye, 1995). In order to get an accurate score from these tools, it is important to first test thoroughly for any sensory impairments (hearing or sight problems), as these can give 'false' low scores.

Some newer observer-related questionnaires are also now available for use as screening tools. These require an interview with a carer (can include a family member) who has known the person with intellectual disability for at least 6 months (so they could have seen any changes). Examples of these tools include the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) (Deb et al, 2007) and the modified Cambridge Examinations for Mental Disorders of the Elderly (modified CAMDEX) informant interview (Ball et al, 2004).

Carers often feel that they already have more than enough form filling to do, but these assessments are recognised by learning disability professionals and can be used as evidence toward reaching a diagnosis that can help unlock the extra resources the person might need as their illness progresses.

With or without these assessments, it is often the attention of the people who live or work most closely with the person to changes in their behaviour and skills that first alerts services to the possibility of dementia .

“What are we trying to achieve when helping the person with Down’s syndrome who is also affected by Alzheimers disease?  We cannot remedy it or put it right.  So we are looking for ways to combat (or compensate for) the effects of it. In this way we hope to maintain the person’s lifestyle as best we can.”(Marler and Cunningham 1994)

What you can do to help someone live with Dementia Support:
Some people may be aware that something is not right in the early stages of their illness. Unless there are very good reasons not to, a person should be told about their illness, and reassured that they will be cared for and supported.

A 'Dementia-friendly' environment:
In order to maintain as much independence as possible, a person with Alzheimer's dementia needs to live in as familiar an environment as possible, with people who are as familiar to them as possible. This is not a time to introduce drastic changes into a person's life; it is a time to start thinking about ways to enable them to keep their independence as long as possible.

An environment should be as stress-free and calm as possible, and designed with a person's sensory and other problems in mind.

*  Daily routines should be maintained.

*  Flooring should be one colour throughout, as changes in colour and texture can be seen as steps or obstacles. Flooring should not be shiny, as this can look like water. Patterned flooring can appear 'frightening' in dim light (to someone with dementia, it can look as if there are moving insects/objects on the floor at night-time).

*  Pictures and signs can be used to help a person find their way around the house, the toilet door could be painted a bright colour to make it easy to find.

*  Mirrors can be removed or covered, as a person may not recognise their own reflection, lighting should not glare.

*  People who the person spends time with, including other people with intellectual disabilities, should be helped to understand the condition and how they can be involved in the person's support.

Maintaining Skills:

  • The emphasis with a person with dementia should be on maintaining abilities, NOT on teaching new skills.
  • Skills relating to dignity, toileting and eating, and activities enjoyed by the person themselves are particularly important.
  • People should be enabled to continue using familiar community resources and leisure activities for as long as possible.
  • Activities should be stimulating, predictable and failure free.
  • Tasks should not be time-limited, and should take place in a calm environment free of bustle and distraction.
  • Tasks can be broken down into component parts and taught in a way that maintains skills.

*  The environment itself should be organised in a way that makes it easy to know where things are, important items like keys, money, TV remote control should be kept in the same place .

"The maintenance of skills is only possible in a milieu which aids concentration and reduces stress, and which values relationships and people’s emotional well being. A concentration on achievement will lead to confrontation, stress and damage to self-esteem." (Kerr 1997)

People with Alzheimer's Dementia continue to communicate - but it becomes harder for us to work out what they are trying to say. Carer's need to be alert as much to the emotional content of what is being said as to the words being used.

Do's and don'ts of communication with a person with dementia
  • Find a quiet calming place.
  • Approach the person from the front, and establish eye contact.
  • Try not to stare, as this can be intimidating.
  • Smile once you have been seen.
  • Identify yourself, and use their name.
  • Make sure you are seen before touching a person, many people with Down's also have hearing loss and visual impairment.
  • Try to talk to the person on your own.
  • Talk at the time of day when that person is usually most lucid.
  • Speak slowly and clearly.
  • Keep questions simple, and only ask one question at a time.
  • Be direct, and say what you mean - Don't say 'I can't be everywhere at once', try 'I will be with you soon'.
  • Use pictures and photographs and objects to help your communication.
  • Encourage the person to talk about the past.
  • Talk about real concrete things, rather than abstract ideas.
  • Give the person plenty of time .
  • Try to communicate when there are distractions, such as other people talking, or the TV is on (Even with the sound turned down).
  • Use long complicated sentences.
  • Talk about something a long time before it will happen, as this can cause anxiety.
  • Assume that the person will know what you are talking about when you use words like 'he' 'she' or 'it'.
  • Keep repeating something if you are misunderstood.
  • Use gestures that might seem threatening.
  • Shout.
  • Try to rush the person.

(Adapted from Kerr 1997 p35-36)

One day I wrote her name upon the strand, But came the waves and washed it away; Again I wrote it with a second hand, but came the tide and made my pains his prey.

Edmund Spenser 1552-1599

It is our memories that help us know who we are. Reminiscing reminds us of our place in the world, and our identity. It is usually a pleasurable activity, and becomes increasingly important as we get older, as we look back on our lives and integrate our experiences. This is likely to be just as true of people with Down's syndrome and dementia.

It is also important for those caring for someone with dementia to know who they were and what they were like before the effects of the disease. That person remains, though it becomes more difficult for us to reach them.

Reminiscing can be encouraged and facilitated by activities such as:

  • Group reminiscences ; using videos, music, photographs and stories about the past.
  • One-to-one reminiscence; uses similar techniques, but can be less overwhelming than group work, and can use more personal memorabilia.
  • Visits to familiar places and old friends.
  • Making a 'life book' or a 'life box'; a collection of personal photographs, videos and significant objects that can be used by the person to talk about the past.

Everyone who knows the person can be involved in these activities, including carers, friends and relatives, who can find collecting items for a life box a positive way of helping with the person's care, and expressing the meaning and value of the person's life.

Medical treatments

There are now a number of medications available (known as 'antidementia drugs') for use during the 'moderate' stage of Alzheimer's dementia. Whilst they do not reverse the process of dementia, they can help to slow down the decline in some people. It is important to bear in mind that these medications may not be suitable for everyone, particularly those with severe epilepsy, peptic ulcers or slow heart-rates.

Some people with Down's Syndrome and Alzheimer's Dementia may develop symptoms of depression, or significant agitation during the illness. This may sometimes need treatment with antidepressants or 'antipsychotics', in addition to the environmental / behavioural managements already described.

Sources Of further information


Downs Syndrome Association
Langdon Down Centre
2a Langdon Park
TW11 9PS

Tel: 0845 230 0373



Down's Syndrome Scotland
158/160 Balgreen Road
Eh31 3AU

Tel: 0131 313 4225



Alzheimer's Society
Devon House
58 St Katharine's Way
London E1W 1 JX

Tel: 020 7423 3500



British Institute of Learning Disabilities (BILD)
Campion House
Green Street
DY10 1JL

Tel: 01562 723010



Books/Articles/Resource Packs

Ball SL, Holland AJ, Huppert FA, et al (2004). The modified CAMDEX informant interview is a valid and reliable tool for use in the diagnosis of dementia in adults with Down's syndrome. Journal of Intellectual Disability Research , 48, 611-620.

Deb S, Hare M, Prior L, et al (2007). Dementia Screening Questionnaire for Individuals with Intellectual Disabilities. British Journal of Psychiatry , 190, 440-444.

Deb S, Hare M & Prior L (2007). Symptoms of dementia among adults with Down's Syndrome: a qualitative study. Journal of Intellectual Disability Research , 51, 726-739.

Dodd, K. Turk, V. Christmas, M. (2002) Down's Syndrome and Dementia; Resource Pack . Kidderminster ; BILD.

Earnshaw, K. Donnelly, V. (2000) Down's Syndrome & Alzheimer's Disease; A Training Pack for Carer's and Staff Working With Individuals Who Have Dementia. Bradford; Bradford Community Health NHS Trust.

Evenhuis HM (1996). Further evaluation of the Dementia Questionnaire for Persons with Mental Retardation (DMR). Journal of Intellectual Disability Research , 40, 369-373.

Gedye A (1995). Dementia Scale for Down's Syndrome. Manual. Vancouver , BC : Gedye Research and Consulting.

Insel, K.C. Badger, T.A. (2002) Deciphering the 4 D's: cognitive decline, delirium, depression and dementia - a review. Journal of Advanced Nursing 38(4) Pp360-368.

Kerr, D. (1997) Down's Syndrome and Dementia; Practitioner's Guide. Birmingham ; Venture Press.

Kerr, D. Innes, M. (no date) What is Dementia? A Booklet About Dementia For Adults Who Have A Learning Disability. Edinburgh; Scottish Downs Syndrome Association.

Marler, R. Cunningham, C. (1994) Down's Syndrome and Alzheimer's Disease. Teddington; Downs Syndrome Association.

Oddy, R. (1998) Promoting Mobility For People With Dementia. London ; Age Concern England .

Stanton LR & Coetzee RH (2004). Down's syndrome and dementia. Advances in Psychiatric Treatment , 10, 50-58.

Wilkinson, H. Kerr, D. Cunningham, C. Rae, C. (2004) Home For Good; Preparing to Support People With Learning Difficulties In Residential Settings When They Develop Dementia. York; Joseph Rowntree.

See Article on this Website :

Ageing and its consequence for people with Down's Syndrome by Tony Holland

This article was written for the website and published on the site in December 2007.