Improving the physical health of those with mental illness

Introduction

Alzheimer Scotland is Scotland’s leading dementia charity. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications. We welcome the opportunity to comment on Improving the Physical Health of those with Mental Illness consultation paper.

There are currently 59,000 to 66,000 people with dementia in Scotland, 1,350 to 1,650 of whom are aged under 65. As our population ages there is projected to be a 75% increase in the number of people with dementia in Scotland by 2031.

Dementia is a long-term condition which gradually and inexorably impairs every aspect of a person’s mental function, from memory and decision-making to the activities of daily living and personal care. The complex, unpredictable and progressive nature of the condition means that dementia has a profound impact both on people with dementia and on those who care for them.

The Scottish Government has identified dementia as a national priority and has set NHS targets for the early diagnosis and management of people with dementia.

Inclusion of dementia

We do not believe that the document as it stands is sufficiently relevant to the physical health needs of people with dementia. Although dementia is mentioned in passing, the document is largely geared to younger people (under 65) with severe mental illness.

Substantial revision is required if the final report is to adequately address the physical health of people with dementia. Unlike other mental health conditions, dementia is a progressive terminal condition. The needs of people with dementia intensify as the illness progresses; physical health is important to people at all stages of dementia.

The needs and circumstances of people with dementia differ substantially from those of younger people with severe mental illnesses and need to be addressed separately. For example:

• Most people with dementia are older, and old age has significant implications for physical health.
• There are problems caused by having dementia which may affect physical health; for example failure to recognise symptoms, forgetting medication, forgetting to eat or drink. This will also exacerbate the symptoms of the illness, undermining the ability of the person to self manage the condition in the community with support.
• Additional problems experienced by people with dementia may also impact on their physical health; one example is limited access to physical activity because of impaired judgement and orientation and other concerns about safety combined with lack of practical support.
• 40% of people with dementia live in care homes and maximising their physical health is an issue in itself.
• A large body of evidence exists on physical health and dementia including risk reduction strategies.

For these reasons, we believe that the document should include dementia as a substantial separate section.

General points

• The final report should clarify who it relates to at the outset. The draft report refers to mental health, severe mental health and some specific conditions. There should be consistency in the terminology adopted.
• There is little mention of the role of the voluntary sector in the draft report. The voluntary sector has a key role in providing information and supporting people with dementia and other mental health illness. For example Alzheimer Scotland produces information on healthy living with dementia and provides support in some areas for initiatives such as walking groups for people with dementia.

Evidence base

This section refers to some specific conditions, but fails to mention others. There is a significant amount of evidence that is relevant for people with dementia that is absent from this section. Reference should be made to the following points:

• Good diet, physical activity and mental stimulation are very important for the general health and wellbeing of people with dementia throughout the different stages of the illness. Other than in the very early stages, the support of carers and services will be required to assist people with dementia to maintain a healthy lifestyle.
• A growing body of evidence exists on physical health and old age, including risk reduction strategies for dementia. Alzheimer Scotland’s publication Good for you- good for your brain documented the evidence on risk reduction and dementia in 2006 .
• Dementia is an illness of the brain, and for some people with dementia physical symptoms are part of the illness. For example people with Lewy Body dementia can experience physical symptoms such as tremors and difficulty starting movements; people with stroke-related dementia may also have partial paralysis; Huntingdon’s dementia causes uncontrollable movements of the limbs and body; mobility, use of hands and swallowing for people with Alzheimer’s disease can be affected by damage to the motor cortex.
• Vascular dementia can be as a result of heart disease or hypertension. People with vascular dementia may also experience physical problems associated with having small strokes. It is therefore important to monitor these physical health factors and to support people in improving their cardio-vascular health.
• People with dementia are at risk of their cognitive problems overshadowing their physical health needs, which is due in part to having difficulties in communicating their problems particularly in the latter stages of the illness.

Equity of access for delivery of care

There is no mention of dementia in the section on older people:

• The prevalence of dementia increases dramatically in the population aged 65 years and over. Most people with dementia are older and that has significant implications for physical health, such as falls associated with ageing.
• Co-morbidity of physical health problems in older people with dementia is also an important issue.

We are happy to be contacted for clarification or further discussion of issues raised in our response. Alzheimer Scotland would also be happy to participate in formulating an additional section of the guidance.

Kate Fearnley
Health and Community Care Director
14 May 2008