This site is intended for health professionals only


Ten tips for providing more holistic and supportive dementia care

Ten tips for providing more holistic and supportive dementia care

Continuing our series showcasing highlights from Pulse365 Live and Virtual events, GP and dementia specialist Dr Antonia Moore provides ten tips for providing more holistic and supportive dementia care in general practice

It is estimated that 944,000 people (one in 11 people over the age of 65) are living with dementia in the UK and up to 35% of them remain undiagnosed.1 This means that they are not able to access the help that might make their and their carers’ lives better.

When someone presents to their GP worried about their memory, they will be fearful and may be angry that family view them to have a problem that they themselves do not acknowledge. In some languages there is not even a word for ‘dementia’ and it remains taboo for many.2

So what should we find out about someone? Dementia is a progressive condition affecting cognition and function. It is not just about memory.

1. Take a detailed history

Consider some key factors that may be contributing to cognition problems:

  • Hearing and vision. Diminishing senses can increase isolation and impact on someone’s understanding of what is going on around them.
  • Medical history. This includes control of hyperlipidaemia, hypertension and diabetes.
  • Alcohol and smoking. Alcohol is a reversible cause of cognitive impairment.
  • Sleep. Poor sleep exacerbates poor cognition – check for symptoms of obstructive sleep apnoea.
  • Medications. Think about the anticholinergic burden (ACB). ACB score of ≥ 3 may increase the risk of cognitive and functional impairment, falls and mortality in older adults. Higher doses and long-term use are associated with increased risk of dementia.3 Some commonly prescribed drugs such as paroxetine, amitriptyline, tolteradine or oxybutynin each, independently, score 3 and stopping or switching to lower ACB alternatives may be appropriate. The ‘ACB’ calculator is a helpful tool.4
  • Psychiatric history. People with learning disability are at particularly increased risk for dementia, while depression and anxiety are also associated with a higher risk of developing it. Remember also that depression can cause cognitive problems and should therefore be considered as a differential.
  • Falls. Those who are fallers will not be prescribed acetylcholinesterase inhibitors if found to have Alzheimer’s.

2. Explore the patient’s cognitive function

Explore the patient’s particular problems with cognition. For example:

  • Memory loss – short-term memory, disorientation, getting lost.
  • Difficulty with familiar tasks – eg, cooking meals, organisational skills.
  • Problems with language – eg, word finding, naming.
  • Poor judgement – eg, dressing inappropriately for weather, minor traffic infringements.
  • Trouble keeping track of things – eg, conversations, finances.
  • Misplacing things – eg, losing or finding things put in unusual places.
  • Changes in mood or behaviour – eg, depression, anxiety, mood swings, disinhibition.
  • Change in personality – eg, irritable, suspicious, anxious, antisocial.
  • Loss of initiative – eg, passive and apathetic, increased sleeping, loss of interest.
  • Specifically ask about driving – warning signs such as getting lost, unexplained accidents, driving too slowly. ‘I only drive to the supermarket, so I’m fine’ quite possibly means they are not.
  • Hallucinations. People may be embarrassed to mention that they are experiencing hallucinations so always ask specifically about this.

3. Do a focused physical exam and arrange investigations

Observe someone’s gait as you collect them from the waiting room – are there any signs of tremor or movement abnormality that might suggest a neurological disorder such as Parkinson’s? Check BP, pulse rate and rhythm.

Investigations should include FBC, U&E, LFT, lipid profile, b12, folate, ferritin, HbA1c, Calcium, TFT, CRP, ESR to detect any correctable abnormalities (such as abnormal thyroid function or calcium levels, anaemia, b12 or folate deficiency etc) that may impact on cognition.

4. Use a cognitive screening tool

To get a measure of cognition, use a quick tool such as 6CIT or GPCOG.5,6 This does not need to be time consuming. There are many online tools that will calculate the score as you go and the result should be included in your referral.

5. Take a collaborative history if possible

This is always useful, particularly when the patient has limited insight, but may feel awkward to do in front of the person with a possible cognitive problem. The short informant questionnaire on cognitive decline in the elderly (IQCODE) is a way of doing this without someone having to speak about their family member in front of them and is in the form of a short questionnaire that the ‘informant’ can fill out while you are performing your patient’s cognitive test.7 It poses questions that relate to the person’s functioning now, compared to that 10 years before. A score of 3 or less is normal and a score of above 3.3 suggests that there may be a problem.

6. Consider referral even if cognitive tests normal

If someone is worried, refer to the local memory assessment service. Specialist memory assessment may detect elements that were not uncovered in a brief GP appointment or may identify mild cognitive impairment for which advice can be given. Always ask for contact details of a family or friend in order that appointments can be sent to them too, to reduce the chances of a missed appointment.

7. Offer support while waiting for specialist assessment  

While the patient is waiting for a diagnosis, ensure they are supported as much as they need to be. Do you have a dementia coordinator service that can link with people in the ‘waiting’ stage? If not, consider whether a care needs assessment might be relevant or a social prescribing referral to help with loneliness and lack of stimulation?

Also, always address driving if you are concerned that someone may not be safe. Safe driving requires, among other elements, the involvement of: visuospatial perception; attention and concentration; memory; insight and understanding; judgement and adaptive strategies. All of these may be impacted by dementia.8 If you have genuine concerns, prior to the specialist assessment, per GMC guidance, you have ‘a duty to protect and promote the health of patients and the public’.9 Patients can be signposted to driving assessment centres, should they wish to have an assessment done whilst they are waiting for their appointment.10

8. Consider using ‘DiaDeM’ in care homes   

Many care home residents will have undiagnosed dementia (progressive, significant memory impairment combined with increasing needs for support for basic activities of daily living such as personal care, continence, medication) but referral to the memory assessment service could be very stressful for them. Having the formal diagnosis will allow families, carers and doctors to view the person through the lens of them having dementia and will allow most appropriate care and planning. The DiADeM tool was developed specifically for diagnosing advanced dementia in the care home setting.11

9. Advise on living well with dementia

Patients may ask you about their diagnosis and what they should be doing to stay as well as possible. Treating existing conditions and maintaining a relatively healthy lifestyle including limiting alcohol should all be advised but I personally emphasise the benefit of doing things they enjoy. Whilst those with Alzheimer’s (70%), Mixed (up to 10%) or Lewy Body dementia (5-30%) may have been started on dementia-specific treatment, those with vascular dementia will not. Some will ask about their ‘stage’ of dementia and I try to avoid pigeon-holing people into these and explain that every person’s journey is different. There are excellent resources available (eg, from Alzheimer’s Society, Alzheimer’s Research UK, Dementia UK) and it is a good idea to be familiar with the websites.

Mild cognitive impairment is a diagnosis given to those that have a deterioration in cognition but have no functional difficulty with day-to-day living. About a third will improve, a third will stay unchanged and about a third will progress to dementia.12-14 Whilst some memory services may routinely follow these patients up after 6-12 months, many will advise patients to seek a re-referral if things get worse.

10. Make post-diagnostic and annual reviews count

  • By all means, tick the necessary QOF boxes but find out what really matters to your patient. Ask about mood, sleep, social interactions and sign-post to relevant services (eg, day centres, lunch clubs, coffee mornings).
  • For Alzheimer’s, mixed dementia and Lewy body dementia or Parkinson’s dementia anticholinesterase inhibitors (ACIs) may have been prescribed. Monitor heart rate and blood pressure but unless bradycardic, can continue long term.
  • Memantine can be commenced by the GP for those already on an ACI, if necessary (behaviour and mood problems) and if renal function allows. This can also be continued in the long term.
  • Do a proper medication review including ACB, review the targets for blood pressure and HbA1c – are they appropriate for this patient? Are medications (eg, Adcal-D3, statin) still relevant?
  • Consider advanced care planning and use of ReSPECT.15 Think about DNAR and Power of Attorney- all better done early whilst the patient can be involved.
  • Check out how the carer is doing. Do they need (more) help? Do they need you to suggest residential care?
  • Provide sources of information for the person living with dementia and their carer. Many areas have their Admiral nursing service to help support carers and Dementia UK have an Admiral nurse helpline.16

Dr Antonia Moore is a GPwER in dementia at NHS Kent and Medway Partnership Trust 


References

1. Alzheimer’s Research UK. Statistics about dementia – Dementia Statistics Hub

2. Alzheimer’s Society. South Asian communities affected by dementia deserve better support. 2023

3. NHS Hull University Teaching Hospitals. Anticholinergic Burden (ACB). 2021

4. Alzheimer’s Society. Anticholinergic burden calculator ACB Calculator

5. Patient website. General Practitioner Assessment of Cognition (GPCOG)

6. Patient website. Six-item Cognitive Impairment Test (6CIT)

7.  Australian National University. Informant questionnaire on cognitive decline in the elderly

8. UK Government. Driver and Vehicle Licensing Agency.  Assessing fitness to drive – a guide for medical professionals 2024

9. General Medical Council. Patients’ fitness to drive and reporting concerns to the DVLA or DVA  

10. Driving Mobility. Find a centre  

11. DiADeM Tool  

12. Gabryelewicz T, Styczynska M, Luczywek E et al. The rate of conversion of mild cognitive impairment to dementia: predictive role of depression. Int J Geriatr Psychiatry 2007;22:563-7

13. Up to Date. Mild cognitive impairment: prognosis and treatment. 2021

14. Alzheimer’s Research UK. Mild cognitive impairment

15. Resuscitation Council UK. ReSPECT Ten Top Tips_FINAL.pdf (resus.org.uk)

16. Dementia UK. Admiral Nurse Dementia Helpline

Pulse 365 LIVE Events cover a broad array of topics pertinent to you, your patients, and your practice. You will gain free CPD and be able to take part in live Q&As. Specifically created for all practising, GMC-registered GPs and trainees, you will hear from experts across primary and secondary care, and network with like-minded GPs. Sign up for your nearest event today.


          

Visit Pulse Reference for details on 140 symptoms, including easily searchable symptoms and categories, offering you a free platform to check symptoms and receive potential diagnoses during consultations.