Down’s syndrome and dementia – a support guide :: Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

The Northumberland Community Learning Disability Team have a range of staff who can offer support. Staff include:

Learning Disability Nurses
Specialist Learning Disability MacMillan Nurse
Specialist prescribing team
Consultant Psychiatrist
Clinical Psychologists
Support access to Learning Disability physiotherapy services

The team work in close partnership with Northumberland County Council Social Care who may provide Social Workers and Care Managers. Northumbria Health Care NHS Foundation Health Trust may also offer Speech and Language and Occupational Therapist support.

All partners will work with your registered General Practitioner (family doctor).

Contact details for your nearest Community Learning Disability Team: 01670 844 799.

Dementia can affect all aspects of life, both for the person living with dementia, their family, friends and wider circle of support.

Listed below are some experiences you could encounter when living and dealing with dementia.

Relationships
Living with dementia can place a strain on relationships, both for the person, their carers and their friends.

Health
Both the person living with dementia and those around them can experience health problems. Seeking help at the correct time, from the correct person can often help.

Mood (Wellbeing)
Mood may be affected due to a variety of reasons – loss of self-esteem, self-help skills. Carers may experience stress and fatigue.

Planning
Advance care is important to plan ahead for the person living with dementia; by seeking out appropriate interventions and support. This leaflet may help with part of the planning process.

Embarrassment
In understanding any changes that may be occurring this can reduce embarrassment for the person with dementia, their family and friends and provide opportunities to talk though problems with their circle of support.

Loss
Dementia is often called the long bereavement. The person with dementia has what is deemed a social death (a loss of social skills and ability to be involved in making their own choices). This often happens a good while before the actual biological death. The person with dementia’s actions, behaviour or personality can change dramatically. This causes concern for them and their family and friends. People often comment “they’re not the same person”.

Social Life
Both the person living with dementia and their family’s social life can be affected, resulting in stress, irritability and resentment.

More information and knowledge about dementia
Being able to talk to others with personal experience of dementia
Short-breaks away from caring, including support from friends and professionals

Disorientation
Confusion
Problems with making decisions
Reduced interest in activities
Inability to learn new things
Seizures/myoclonic jerks may occur in early stage in some people
Person is not aware that they forget things
Wandering/restlessness
New short-term memory loss
Change in usual communication
Loss of social skills
Loss of daily living skills
Agitation
Fluctuating mood
Emotional instability
Change in sleep pattern
Food preferences may change as a result of changes to taste.

David is a 45-year-old man living at home with his parents. He has recently been unable to recognise familiar people who come into the shop where he works. Work colleagues and family think he may be starting to show signs of dementia.

On investigation it transpires that David's eyesight had deteriorated. David now has new glasses, and he can now recognise those customers who come into the shop.

Poor eyesight
Inflammation of the cornea
Cataracts
Hearing loss
Constipation
Spine disturbance
Poor diet – leading to nutritional problems or anaemia
Side effects of medication
Sleep apnoea/lack of sleep
Menopause
Recent bereavement or significant change
Obsessive Compulsive disorders
Osteoporosis
Urinary tract infection
Changes in knee or hip joints
Depression
Cardiac abnormalities – especially if undetected in earlier life
Hypothyroidism
Diabetes

Adults with Down’s syndrome are more susceptible to the things below, that can often be confused with dementia:

Poor eyesight
Inflammation of the cornea
Cataracts
Hearing loss
Constipation
Spine disturbance
Poor diet – leading to nutritional problems or anaemia
Side effects of medication
Sleep apnoea/lack of sleep
Menopause
Recent bereavement or significant change
Obsessive Compulsive disorders
Osteoporosis
Urinary tract infection
Changes in knee or hip joints
Depression
Cardiac abnormalities – especially if undetected in earlier life
Hypothyroidism
Diabetes

There are some treatable conditions that have similar signs and symptoms to dementia. Some of the conditions may be present along with the dementia, or they may be the presenting problem themselves.

It is important that any treatable condition is ruled out before assuming that a person has dementia. Regular health checks and screening can identify treatable conditions that may also be present along with dementia.

It is important to monitor and record changes between appointment with the GP or other professional. This may help with the treatment and care options available.