Growing Older with Learning Disabilities and Dementia

Growing Older with Learning Disabilities and Dementia (GOLDD) is another service that has been added to the Birmingham Carers Hub offer.

Through a partnership with Forward Carers, Midland Mencap will help to deliver the new Birmingham Dementia Carers Pathway. Midland Mencap has a long history of working on the city’s G.O.L.D.D agenda, supporting both working age adults with a learning disability and dementia and their family carers as they grow older together.

Joining our established Family Carers Wellbeing Service is the new dedicated post of ‘GOLDD Wellbeing Facilitator’. Lara Carter, has been appointed in this exciting new role and will work with family Carers of adults growing older with dementia and our pathway partners, to build a person centred and user led wellbeing and support offer.

This is a unique opportunity to work together to co-produce a mix of opportunities for GOLDD Carers to engage with each other and benefit from: information, advice and guidance, health and wellbeing workshops, GOLDD Creative Arts, GOLDD Café, GOLDD wellbeing walks. In addition, there will be a range of accessible and tailored indoor and outdoor activities for Carers, or as a family with the people they care for.

For more information call Lara Carter on 07912 268 248

People with a learning disability are, unfortunately, more at risk of developing dementia – particularly those living with Down’s syndrome. Often individuals with a learning disability develop early-onset dementia, which is dementia in a person under 65-years-old, and their dementia can progress more rapidly, or at least appear to progress more rapidly if timely diagnosis isn’t made.

Getting an accurate diagnosis of dementia for a person with a learning disability can be difficult. Understanding amongst health and social care professionals about learning disabilities and dementia is still patchy, and as a result people with a learning disability often struggle to get a diagnosis, as many of their symptoms may be explained away by the fact that the person is getting ‘older’ or is being ‘uncooperative’.

How do I know if the person I care for is developing dementia?
Memory loss is usually one of the most recognisable signs that someone might be developing dementia, but this may not be the case for people with a learning disability.  Often, people with a learning disability might demonstrate other symptoms first, such as:

  • changes in their personality or mood;
  • difficulty making decisions;
  • changes in the way they live their day to day life; and
  • changes in the things they could normally independently manage.

If you are noticing changes in the person you care for, it can be helpful to monitor these changes by keeping a record. Write down what you noticed, when it occurred, and whether these changes come and go, or whether they are permanent. Everyone can have a bad day, but several bad days in a row might be a sign of something more serious.

If the changes are more persistent, getting worse or are causing an impact on the person’s activities of daily living, you should arrange for the person to see their GP, taking a record of these changes.

Assessing if dementia is the cause
A number of other conditions and illnesses can cause these changes and it is important that these are ruled out by the GP as soon as possible. The GP should start by assessing whether the person has an underlying treatable condition, for example depression, vitamin B12 deficiency, or abnormal thyroid function. They should offer to take blood tests, a scan and a urine sample to rule out any other physical health issues, if they are able to participate in such tests.

If all other physical or mental health conditions have been ruled out as possible causes of the changes in memory, behaviour and/or personality/mood, the GP may then refer the person for further investigations. This could be at a memory clinic (a place for specialist assessment to diagnose, treat and support people with dementia), at a learning disability clinic or with a doctor who specialises in learning disability and/or dementia.

What happens if dementia is diagnosed?
If a dementia diagnosis is the outcome of further investigations, the diagnosing clinician should be asked what type of dementia the person is believed to have. Certain symptoms are associated with different types of dementia, and knowing this information can help in the planning of care and support for the person.

There are a number of practical steps that can be taken to support the person. These include:

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