Michelle started noticing some changes in her mother Debra 2 years ago. Debra who has always been confident and outgoing was becoming overly anxious about trivial things and withdrawn, at the age of 56. Debra was also repeating herself a lot and in Michelle’s words “nothing seemed to stick in mom’s head”.
Having observed similar symptoms in her grandmother and others, Michelle realized what was happening with Debra. In 3-4 months Debra was diagnosed with young-onset dementia, just as Michelle dreaded. Michelle, now in her mid-twenties is taking care of her 58 year old mother.
Debra’s story is not a typical dementia story. Usually dementia symptoms are seen in older adults and dementia is diagnosed after the age of 65 years. However, 2%-8% of dementia occurs in individuals below the age of 65 and is called young-onset dementia (YOD).
YOD differs from late-onset dementia in several ways. Firstly, the person develops dementia at a stage of life when they least expect it- the person could be at the peak of their career, supporting dependent children and aging parents, and having financial obligations. This presents unique challenges to the individual and his or her family.
Secondly, YOD need not present with memory loss. It could present with atypical symptoms such as changes in personality (anxiety, loss of confidence), behaviour (irritability, loss of empathy, becoming abrupt and short with close family members), and difficulty with planning, organizing and decision-making. The person could be making mistakes or struggling at work, though their work has remained unchanged.
YOD could also present with problems with vision and driving difficulties, or speech and language issues, or difficulties with movement, balance and coordination.
Thirdly, it is due to a large variety of causes, some of which could be treatable.
Fourthly, diagnosis could be delayed due to the younger age and atypical presentation. The symptoms could be attributed to stress, overwork, depression, and to menopause in women.
Debra got diagnosed early because Michelle recognized the tell-tale signs of dementia and was acutely aware of the strong family history. Even when Debra’s physician dismissed Michelle’s concerns initially, Michelle insisted on getting Debra assessed by a neurologist.
What causes YOD? Alzheimer’s disease accounts for 30-35% of YOD. 10% of these cases is caused by the familial or genetically inherited variety of Alzheimer’s disease, due to mutations (defects) in three genes present on chromosome 1, 14, and 21.
Vascular dementia from strokes accounts for 15% and another type of dementia – Frontotemporal dementia – is associated with 10-15% of YOD. 10% of cases could be related to alcoholic brain damage.
YOD can also be due to treatable causes such as disease of the thyroid gland or adrenal gland, Vitamin B12 deficiency, depression, chronic infections, and sleep apnoea. It can also be due to rare neurodegenerative and metabolic disorders.
What should you do if you are concerned about symptoms in yourself or in a family member? The first step is to start documenting them. If the symptoms become more frequent, consult your physician. Your journal would convince the physician to refer you to a neurologist.
Diagnosis is made on the basis of detailed history from the person and family; extensive tests of mental abilities, behaviour and daily functioning; full physical exam; blood tests; and brain scans.
Early diagnosis enables you to get early treatment and access the assistance and supports that are available to you from your employer, government, and from the community. Your local Alzheimer Society can assist you in accessing all the supports that you need for you and your family to have a good quality of life.
Padmaja Genesh holds a bachelor degree in medicine and surgery as well as a bachelor degree in Gerontology, and has spent several years teaching and working with health care agencies. She is now a Learning Specialist at the Alzheimer Society of Calgary. Please send your comments to padmajaganeshy@yahoo.ca