Challenges in dementia care

Dementia is a syndrome characterised by a chronic or progressive nature, in which there is deterioration in cognitive function beyond what might be expected from normal ageing. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour or motivation 

GPs are often the first point of contact for people with dementia, and their families. Knowing what to do, how to react and when to refer when a concerned patient or family member presents is vital, especially since studies have shown that early recognition leads to a better outcome for both patient and family.¹

Worldwide, the number of people with dementia is currently estimated to be 44 million and is expected to reach approximately 76 million by 2030 and 135 million by 2050.² In Ireland it is estimated that there are currently around 47,000 people living with dementia and this figure is expected to rise to over 130,000 by 2041.²

The majority of people with dementia in Ireland are living in the community. If predictions are correct, GPs in the future will see a two-fold increase in the number of dementia patients under their care. Difficulty in detecting the passage from normal ageing to the onset of dementia and the lack of a definitive diagnostic tool often precludes early diagnosis. 

Risk factors for dementia

Non-modifiable:

• Age is most important risk factor

• Rare variant early onset Alzheimer’s disease

• Down syndrome

• Family history: those with a first-degree relative with Alzheimer’s disease have a two- to three-fold increased risk

• Sex: Alzheimer’s disease (female), vascular dementia (male). 

Modifiable: (SNAP mnemonic)

• Smoking: ex-smokers have lower dementia risk than current smokers, demonstrating the benefits of quitting

• Nutrition: what is good for the heart seems to be good for the brain. Low saturated fats and high anti-oxidants

• Alcohol: moderate amounts of alcohol have been associated with better cognitive function and reduced risk of dementia. However, excessive amounts over time can increase the risk

• Physical activity: Even simple exercise such as walking has been shown to be beneficial

Others:

• Weight: obesity, particularly at mid life. In old age, those who are underweight or are losing weight are found to be at increased risk of dementia

• Mental activity. Those with a higher education, mentally demanding occupations or participating in mentally challenging leisure activities are found to have a lower risk of developing dementia

• Cholesterol/HTN/diabetes/depression. 

Diagnosis

Dementia is a clinical diagnosis, one of exclusion, supported by investigations. Identifying patients early provides GPs with the opportunity to address modifiable risk factors, optimise supports and to raise future issues that may affect the patient surrounding finances, capacity, care-needs and driving. It also provides patients and their families with the time to come to terms with the diagnosis and to prepare. 

Formal cognitive testing/dementia screening tools

Cognitive functioning tests, while not diagnostic, can provide useful evidence of cognitive impairment to GPs. 

• The Mini-Mental State Examination (MMSE); the most commonly used tool by GPs

• The Montreal cognitive assessment (MoCA); developed initially to discriminate between mild cognitive impairment and normal cognitive function 

• The GP Assessment of Cognition (GPCOG). It is free of charge and its main benefit of use is that it is quick to use 

• The Six-item Cognitive Impairment Test (6CIT) has computerised versions which are becoming increasingly popular in GP settings

• The Mini Cognitive Test (Mini-Cog) uses a three-item recall test for memory and a simply scored clock-drawing test 

• The Addenbrookes Cognitive Examination (ACE) effectively covers the five subdomains: attention, fluency, language, memory and visuo-spatial ability. Free to download app is also available. 

Screening for comorbidities

Depression can be difficult to differentiate in a person with dementia as the two often co-exist. To help differentiate between the two, a validated tool such as the Geriatric Depression Scale (GDS) should be used.

Structural imaging

• CT scan

• Non-contrast usually 

• CT with contrast if screening for stroke, chronic white matter ischaemia, subdural or normal-pressure hydrocephalus

• MRI

• PET CT.

Pharmacology review

Many drugs contribute to cognitive impairment, including: 

• Anticonvulsants

• Antidepressants, especially tricyclics

• Antipsychotics

• Anti-Parkinson’s drugs

• Corticosteroids

• Hypnotics

• Sedatives

• Opioid analgesics, especially pethidine.

Pathology tests

There is no evidence to support or refute that routine pathology tests improve the accuracy of clinical diagnosis of dementia. Consequently, tests should be done according to the history and clinical findings. 

Suggestions include: FBC, U+E, LFTs, serum B12, TFTs, folate, calcium, phosphate, glucose, MSU, as well as an ECG prior to cholinesterase inhibitor use.

Management

Disclosing a diagnosis

Disclosing a diagnosis of dementia is difficult, even for GPs with experience. Studies suggest that diagnostic disclosure in dementia is inconsistent, with up to 50% of clinicians routinely withholding a diagnosis.³ In contrast to this, studies have shown that most patients wish to know their diagnosis in order to plan, organise and to pursue travel. 

In this modern day the issue is no longer whether we should disclose a diagnosis or not, but rather how. It is important to keep the patient at the centre of this discussion. How much does the patient know about dementia? What aspect worries them most? Do they know someone with dementia? Patients often have negative or alarming experiences from people they know with dementia. 

It is important to focus on goals and priorities in the context of the patient’s world when disclosing a diagnosis of dementia. The aim is to maximise functioning and minimise suffering to ensure the highest quality of life for the longest amount of time. It is also important to instil a sense of hope. 

This can be done by making the patient aware of their individual variation in disease manifestation and progression; by emphasising what areas in the brain still function well; as well as the existence of modifiable risk factors and the availability of some drugs and ongoing research progress that has been made in dementia.

Education and support for patient and carer

Patients and their families should be linked in with local support services as soon as a diagnosis is made. Supporting families emotionally and financially, providing advice regarding planning for future capacity issues, and education about disease progression can make a big difference to the lives of both patient and family. 

Carer wellbeing is vital and regular assessment of social support should be considered. The following organisations in Ireland provide excellent sources of information and support to patients and their families: 

• Dementia services Information and Development Centre

• Sonas

• Alzheimer’s cafe networks

• Alzheimer Society of Ireland

• Dementia elevator; provides coping skills

Driving

Driving is an issue that should be discussed early with patients. After receiving a diagnosis of dementia they should be advised to carry out three steps: 

• Inform the insurance company 

• Notify the National Driving Licence Service 

• Obtain an ‘on-road’ driving assessment. Unfortunately, there is a cost involved for each assessment and currently there is no grant available to cover this cost. The Alzheimer Society of Ireland provide excellent patient and carer information leaflets. www.alzheimer.ie

Concerns regarding patient safety is a common issue for GPs, especially while patients are still living at home. Technology can be introduced as a new way to help caregivers and families identify dangers such as wandering. Over 10 different types of trackers have been developed, eg. iTraq2, Project Lifesaver, Mindme, Comfort Zone Check-In, PocketFinder.

Books such as Coping with Memory Problems by Linda Clare and Barbara A Wilson provide practical tips and ideas for patients and their families. 

Pharmacological interventions

Currently there are no drugs proven to modify the neuropathology of dementia once established. Available treatments include:

• Cholinesterase inhibitors. NICE guidelines recommend three options for managing mild to moderate Alzheimer’s disease. Donepezil, rivastigmine and galantamine. Patients who do not tolerate one cholinesterase inhibitor may tolerate another. Clinical studies have shown that these can improve cognitive function and/or delay or lessen the rate of cognitive and functional decline, however the clinical benefit remains uncertain and the studies are all short-term studies 

• Memantine: a non-competitive N-methyl-D-aspartate receptor (NMDA). Often used in combination with cholinesterase inhibitors 

• Souvenaid: a daily drink which contains a cocktail of vitamins and nutrients, including the patented compound uridine-monophosphate which is thought to help the formation of synapses in the brain. A recent two-year
EU-funded study carried out the first randomised clinical trial to investigate the effects of Souvenaid in prodromal AD. It has shown a reduction in brain shrinkage by 38% over two years, especially in the hypocampal area. However, the study did not find a significant benefit in cognitive function⁴

• Vitamin E 200mg (limited evidence for this)⁵

• Thiamine 200mg: consider in those with a history of alcohol misuse.

Referral to a specialist: memory clinics

Who should be referred?

• Uncertainty about the diagnosis 

• Young onset < 65 years

• Strong family history

• When a non-Alzheimer’s disease is likely

• Patients with language problems, hallucinations or Parkinsonism

• When considering anti-dementia medication.

There are currently 14 memory clinics operating in the Republic of Ireland. These clinics have specially trained personnel who can diagnose memory problems and provide people who are concerned about cognitive and memory problems with a diagnosis, information, treatment (when necessary), advice, counselling and emotional support. 

Cognitive stimulation and recreational activities

Maintaining cognitive, physical and social activity appears to be helpful in improving the quality of life, wellbeing and physical health of the person with dementia. A Cochrane review of 15 randomised controlled trials found a clear, consistent benefit to cognitive function associated with cognitive stimulation. This benefit remained at one year follow-up.⁶ Encouraging patients to continue longstanding hobbies is important as new learning is compromised. 

Increased prevalence

The prevalence of dementia worldwide is increasing. It is estimated that the average GP will have at least 35 registered patients with dementia. This is similar to the number of patients with more commonly discussed conditions such as rheumatoid arthritis. 

A working knowledge of a structured approach to assessment and management of dementia and associated comorbidities is vital in order to improve the quality of life and to ease caregiver burden. It is a central obligation of GPs to accompany patients on their journey through the stages of dementia with goals of maximising independence, quality of life and instilling realistic hope. 

References

1. Iliffe S, Manthorpe J, Eden A. Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study. Family Practice 2003; 20(4): 376-381. 
2. Pierce M, Cahill S, O’Shea E. Prevalence and projections of dementia in Ireland 2011-2046. Trinity College Dublin, National University of Ireland Galway and Genio, 2014
3. Lee L, Weston WW. Disclosing a diagnosis of dementia. Canadian Family Physician July 2011; 57(7): 851-852.
4. Soininen H, Visser PJ, Kivipelto M, Hartmann T for the LipiDiDiet study group. A clinical trial investigating the effects of Fortasyn Connect (Souvenaid) in prodromal Alzheimer’s disease: results of the LipiDiDiet study 2016. Presentation held at 14th International Athens/Springfield Symposium on Advances in Alzheimer Therapy, March 10, 2016
5. Press D, Alexander M, Treatment of dementia. Uptodate.com
6. Woods B, Aguirre E, Spector AE, Orrell M. Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Review February 2012